Family-Focused Care to Meet Population Needs Sue Ellen Bell ● Kelly Krumwiede

C H A P T E R 12

C H A P T E R O B J E C T I V E S

1. Compare and contrast individual, family, and population-based health care. 2. Apply an ecological lens to identify multiple levels of health risks associated with human health. 3. Identify the relationships between population-based health and vulnerable populations, health

disparities, and social determinants of health. 4. Explore societal health challenges from multiple perspectives. 5. Analyze the evidence that supports the need for population-based care.

C H A P T E R C O N C E P T S

● Department of Health and Human Services

● Distributive justice ● Environmental health ● Government regulations ● Health care costs ● Health disparities ● Health equity ● Health Resources and Services

Association ● Healthy People Initiative

● Indian Health Service ● Medicaid ● Medicare ● Population health ● Prevention ● Social justice ● State Children’s Health

Insurance Program ● Surgeon General ● Vulnerability

Introduction

The culture in the United States is strongly influenced by individualism and competition, but it is also useful to understand the importance of population needs. Population needs pertain to those of the larger society. Families are made up of individuals who live in neigh- borhoods, communities, and larger societies. An ecological lens can help identify the many interactions and interdependent complexities of populations, society, and people. All are dynamic. They are affected by many environmental risks (e.g., natural hazards, disasters, legislative policies, politics). Distributive justice, government regulations, professional

325

2910_Ch12_325-350 05/01/15 11:42 AM Page 325

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

guidelines, standards of care, health promotion, prevention, and at-risk groups are all linked with population health. Social determinants of health, culture, vulnerable popula- tions, and disparities also influence health and illness.

Individual care is tailored to meet the unique health needs of one person and generally aims at cure. Medical care addresses diagnosis, treatment, and rehabilitative options performed by physicians and health care practitioners and uses pharmaceuticals, treat- ments, radiation, and surgery to achieve results. Care evaluation generally involves measuring satisfaction levels and seeing if treatments improved health. Although these findings are useful for individuals, they do not solve population problems. Health care delivery tends to focus on provision of medical services and payments for individual disease treatment with little focus on the impact of the environment or society on families or their communities. This chapter explores ways the lives of individuals and families intersect with the larger society. Some relevant ideas introduced in Chapter 3 are built on in this chapter. Instead of thinking about health care as “fixing” problems, this chapter considers ways to prevent them.

A Brief History of Population Health in the United States

Since the late 1800s, medicine and medical education have been focused primarily on the internal environments of care. Diagnostic tools such as the stethoscope, radiograph, mi- croscope, spirometer, electrocardiograph, and chemical or bacterial tests allowed body assessment (Starr, 1982). Treatments were a few effective medications, immunizations, and surgery. Little medical information was available to nonmedical persons. The American Medical Association asserted its influence and physician authority was the rule. Nurses’ practice was directed by physician orders. Tasks (e.g., medication delivery, injections, in- travenous fluids, vital signs, documentation) were their primary work. Independent nursing actions were few. Nurses attended to activities of daily living and provided phys- ical or psychological comfort measures. Patients were dependent on the medical team for all cures.

In 1945, the Hill-Burton Act, a law signed by President Truman, appropriated funds for building hospitals across the nation. Long underserved people such as African Americans began to demand health care equity; it was 1963 before hospitals in the South were required to treat black persons. Nurses started to focus on cultural differences and varied responses among those getting care. After World War II and the Vietnam War, new immi- grants came to the United States. These immigrants held health care beliefs at odds with the Western views of health and treatments for illness (Bell & Whiteford, 1987; Fadiman, 1997; Tripp-Reimer & Thieman, 1981). Since the 1990s, the push has been for equal health care outcomes, not just equal access (Shi & Stevens, 2010).

Transitions in Caring Practices

Nurses discovered that applying the same interventions to all individuals regardless of culture did not result in the same health outcomes. Nurses began to develop ethnonursing methods (Leininger, 1970, 1990; Tripp-Reimer, 1982), a way to see cultural influences and treat people differently. Cultural competence is now an essential skill for nurses and researchers have found various ways to measure it (Schim, Doorenbos, Miller, & Benkert, 2003). Cultural safety assures accessible and equitable health care for all, as power differences cause health beliefs and behaviors to affect care delivery (Papps & Ramsden, 1996; Polaschek, 1998; Richardson & Carryer, 2005). The social context of illness and health includes system level

326 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

2910_Ch12_325-350 05/01/15 11:42 AM Page 326

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

factors (e.g., politics, government, religion, economics) that cause disadvantages for some (Powers & Faden, 2006; Shi & Stevens, 2010). Politics and power influence health and illness, so blame shouldn’t be placed entirely on the victim of ill health (Doutrich, Arcus, Dekker, Spuck, & Pollock-Robinson, 2012).

Medical Interventions

Rates of surgical and medical interventions have varied geographically; studies of this type are called area studies (Song et al., 2010). Medical care is often influenced by availability of hospital beds, numbers and types of practitioners, and access to imaging machines (Baker, Fisher, & Wennberg, 2008; Wennberg, Bronner, Skinner, Fisher, & Goodman, 2009). A study of physi- cians in Morrisville, Vermont, found that they performed tonsillectomies more often than others in the state. Tightened constraints on tonsillectomies significantly lowered the rate. Rates of carotid endarterectomies, cesarean sections, and hysterectomies also differed geographically. For example, coronary angiography was performed at a 53% higher rate in Florida than Colorado. Reviews found that the number of specialists in the region was an important factor in higher use (Hannan, Wu, & Chassin, 2006). We live in a global society and the needs of people vary from place to place and diverse community needs must be considered (Box 12.1).

Insurance and Policy

As a result of these area studies, insurers and others called for consistency in medical treat- ment across the country. Efforts to identify best practices were initiated. Insurers saw con- sistency as a way to control costs. Efforts were made to correct medical practice variations through use of medical practice guidelines (Schneider, 2014), which raised concerns that individuals needed to be empowered to work with medical care providers in deciding best treatment options.

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 327

BOX 12-1

Family Tree

Maria do Cé u Barb ieri Figueiredo (Portugal)

Maria do Cé u Barbieri Figueiredo, RN, MSc, PhD, is a nursing professor at the University of Porto Nursing College in Portugal. Her interest in family nursing was first nurtured by Dr. Dorothy Whyte, supervisor of her master’s degree at the University of Edinburgh, United Kingdom. In 2004, she was awarded a PhD in Nursing Science at the University of Porto, where she had examined the nursing care needs of families of children with heart defects using a systemic family approach, based on the Calgary Family Assessment and Intervention Models (Wright & Leahey, 2013). She has helped move family nursing in Portugal forward through several initiatives that include dissemination of the Family Health Nurse conceptual framework of the World Health Organization (2000) in collaboration with the Nursing National Association of Portugal (Ordem dos Enfermeiros). She organized the first family nursing postgraduate education program in Portugal and has supervised several dissertations and theses with a family nursing focus. She provided leadership for the First (2008), Second (2009), Third (2010), and Fourth (2012) International Symposium in Family Nursing in Porto, Portugal, and co-edited e-books with papers presented in these symposia. Dr. Maria do Cé u Barbieri Figueriedo serves as a member of the Family Nursing Practice Committee of the International Family Nursing Association and is Portugal’s representative to the Collaborative Family Health Nursing Project under way in Europe. Her research currently focuses on the family nursing approach in community care and cultural adaptation and validation of instruments for use in family nursing.

2910_Ch12_325-350 05/01/15 11:42 AM Page 327

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Infrastructure Elements and Environmental Health

Health policy has mostly focused on decreasing cost and improving access, insurance, and services. To date, nurses have had little influence in these areas. Health is mostly influenced by personal lifestyle choices, the environment, and living or working conditions. A 2008 series called “Unnatural Causes: Is Inequality Making Us Sick?” showed how people’s homes and where they work are backdrops to illness and life expectancy (California Newsreel, 2008).

Starting in the 1970s, researchers identified many environmental influences (e.g., lead, smoke, asbestos, mercury, radon, DDT, polychlorinated biphenyls [PCBs], other persistent organic pollutants [POPs]) as risk factors that can lead to illness and disease (Schneider, 2014). In public health, talk about upstream and downstream risks and solutions for health problems is common. Upstream risks are the source of the problem and the complex social and economic concerns related to health and illness prevention. Downstream risks are closely related to the illness or medical event leading to medical intervention or hospital- ization. Much of U.S. health care delivery, including nursing, is based on downstream think- ing, but upstream thinking focuses on solutions (e.g., behavior, environment, policy, social factors). Upstream solutions have the potential to prevent poor health.

Various environmental areas are places where interventions can influence a more healthy population:

• The social environment � Culture—such as the influence of entertainers on lifestyle choices � Economy—lack of resources may limit healthy choices and treatment options � Religion—certain practices can increase health risks � Politics—beliefs in a certain set of principles and the push to ensure the large

majority follows their beliefs � Policy—creation of laws and regulations that require the population to follow a

specific set of behaviors • The physical environment

� Air—high clean air standards that ensure the population isn’t at risk for health problems

� Water—standards that prevent pollution and support sufficient access to the population

� Land—laws and regulations that ensure that, while private property rights are maintained, property owners do not create hazards for others

� Food—inspections to ensure that growers, processors, and importers do not put the population at risk

� Homes—standards that ensure homes are constructed to withstand the weather and other hazards, such as earthquakes, and regulations to ensure that homes don’t have internal pollution problems, such as mold and asbestos, that are health risks

� Worksites—Occupational Safety and Health Administration (OSHA) regulations to ensure reduced risk of employee injury

� Recreation—regulations and standards to ensure that recreational facilities do not put patrons at risk

• The global environment � Emergency response—state and federal agencies that respond to ensure population

safety in a disaster � Travel—regulations that ensure communicable diseases do not cross national borders � Immigration—laws that restrict persons who may harm citizens from entering the

country

328 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

2910_Ch12_325-350 05/01/15 11:42 AM Page 328

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Recent episodes of terrorism, increased violence in some large population centers, chronic diseases, and pathogens resistant to antibiotics are also risks. These threats call for shifts from individual to more family- and population-focused care. See Table 12.1 for a list of some current laws that regulate population health.

Population Health Perspectives

In the United States, medical care expenditures greatly supersede those for population or public health care. Rather than focus on health promotion and disease prevention, money is primarily spent for intensive and expensive individual care after being stricken by illness or disease (Robert Wood Johnson Foundation, 2011). Yet, many underlying causes of death are pre- ventable. In 2010, the leading causes of death were mostly chronic diseases, unintentional in- juries, Alzheimer’s disease, renal disease, pneumonia/influenza, and suicide (Centers for Disease Control and Prevention, 2013). Risk factors for the 10 leading causes of death were tobacco use, diet, physical inactivity, and alcohol consumption. Upstream thinking would mean aiming to prevent the disease from occurring rather than treating the disease after diagnosis.

The health of populations is often measured by life expectancy, infant mortality rate, and other death rates. Of the world’s nations, the United States has the 50th highest life expectancy but spends more on medical care than any other country (Robert Wood John- son Foundation, 2009). High rates of violence, political instability, and AIDS are partially responsible for the low life expectancy in many nations at the bottom of the life expectancy ranking, but the United States does not have these problems. Some might say the United States spends more but has lower beneficial returns or that some people get too much care and others not enough. Nations that provide health care to all and focus on population health have the highest number of estimated life years. Life expectancy, distribution of care services, and long-term costs could change with a greater prevention focus.

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 329

Regulated hazardous air pollution emissions

Regulated safety and emissions standards within the workplace

Mandated testing of substances for human safety prior to marketing

Outlawed open dumps

Regulated hazardous waste from petroleum refining, pesticide manufacturing, and some pharmaceutical production from “ cradle to grave”

Ruled that environmental tobacco smoke was a carcinogen

Created an integrated FDA plan for prevention, intervention, and response to foodborne illnesses

Shifted the focus of U.S. regulators from reaction to prevention of foodborne illnesses

TABLE 12-1 Ex amples of U. S. Environmental L egislation to Improve Population H ealth

LEGISLATIVE ACT AUTHORITY

Clean Air Act (1970)

Occupational Safety and Health Act (1970)

Toxic Substances Control Act (1976)

Resource Conservation and Recovery Act (1976)

Environmental Protection Agency (1992)

Food Prevention Plan (2007)

The FDA Food Safety Modernization Act (FSMA) (2011)

2910_Ch12_325-350 05/01/15 11:42 AM Page 329

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Primary, Secondary, and Tertiary Prevention

In population health, there are three levels of prevention:

• Primary prevention describes actions taken before the problem exists, such as immu- nizations, purification of water, sewage treatments.

• Secondary prevention aims for early detection and prompt intervention if a problem is found, such as through screening tests (e.g., mammography and colonoscopy).

• Tertiary prevention acts to minimize further complications once a problem is iden- tified, such as diabetes education after diagnosis, medical management, and use of pharmaceuticals.

Traditional medical care mostly aims at tertiary prevention, which tends to be expensive. Secondary prevention can often involve expensive testing or screening. Primary or upstream prevention is the least expensive.

Access to Medical Care

Some medical treatments are very expensive and not always fully covered by health insurance. Wealth and health have been repeatedly linked through research (Anderson et al., 2008; Avendano, Glymour, Banks, & Mackenbach, 2009). Wealth means healthier living condi- tions, ability to buy more nutritious foods, lower stress, and access to better services (Baum, Garofalo, & Yali, 1999; Bird et al., 2010). Longer life is linked with higher socioeconomic status. These factors affect the vulnerability of individuals, families, and communities. Stage of life, culture, health literacy, and the abilities to speak, read, and write English also influence health risks and outcomes. Neighborhood affects access to clean water, social support, and safety. In 2011, Japan’s families experienced a giant tsunami that killed nearly 16,000 people and destroyed homes and reordered lives of those living 6 to 7 miles away. Drs. Nojima and Hohashi are teaching nurses in this nation ways to give family-focused care (Box 12.2).

Fairness in the Distribution of Goods and Services

The burden of lower life expectancy and higher rates of infant mortality falls dispropor- tionately on the poor. Health disparities exist when certain groups do not have the same health opportunities as others and often result from unequal distribution of social goods. For example, we do not choose the family we are born into and so we acquire by default the heritage of our families. Health equity means fairness in the distribution of services and resources so that all can achieve optimal health. Equity cannot be guaranteed because each patient situation is different, but fair apportionment of resources is the optimal goal. Nations address these needs differently.

Social J ustice

A book about social justice noted needs to address the underlying social determinants vital to overall population health (Powers & Faden, 2006). Social justice implies that principles of fairness exist and people deserve equal chances. Some think social justice should be a fifth metaparadigm concept in nursing due to its importance in achieving population health (Schim, Benkert, Bell, Walker, & Danford, 2007). Social justice implies many ideas. For example, distributive justice refers to initiating and supporting action to meet public needs, especially of vulnerable populations (Grace, 2009). Formal systems and laws exist to help decide who gets goods (e.g., food, shelter, clean environment,

330 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

2910_Ch12_325-350 05/01/15 11:42 AM Page 330

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

health care) and services. Nurses who think family can advocate for fair distribution of available resources.

Governments and people disagree about what is fair; national consensus seems impossible. In the United States, self-reliance and individual freedom are valued. Distributive justice is usually viewed as equal access and equal shares but not necessarily equal outcomes. Public health advocates think fair distribution can occur only when all have an “even playing field.” Agreement about inequalities must be addressed before resource distribution will change. Health care financing has implications for the health outcomes of the nation’s families.

Lifestyle B ehaviors

Major causes of illness and disease, in the United States and other developed nations, are mostly linked with behaviors or lifestyle choices. Lifestyle risk factors are attributed to tobacco use, high blood pressure, overweight, physical inactivity, alcohol abuse, and unhealthy dietary intake (Danaei et al., 2009). In 2010, heart disease and malignant neoplasms accounted for 47% of all deaths (Murphy, Xu, & Kochanek, 2012). Other contributors to disease are genetic composition (at least 20% of all infant deaths), mi- crobial agents (6%), and toxic agents (4%) (Mokdad, Marks, Stroup, & Geberding, 2004). When large groups of people act in similar ways, these risks are viewed as social determinants of health. For example, the placement of sugary products near the check- out aisle becomes an environmental factor that influences buyers’ choice. Even knowing that items are unhealthy, people may be highly motivated to choose impulsively the less healthy items.

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 331

BOX 12-2

Family Tree

Sayumi Nojima, RN, PHN, DSN (Japan)

Sayumi Nojima, RN, PHN, DSN, is the vice president at Kochi Prefectural University. After receiving a doctoral degree of Science in Nursing from the University of California, San Francisco, she joined the Faculty of Nursing at Kochi Women’s University and started a master’s program that focused on advanced practice and the preparation of certified nurse specialists in family nursing. Dr. Nojima developed the Family Empowerment Nursing Model, which has been extensively used in nursing education and practice in Japan. She is the Chief Editor (with Hiroko Watanabe) of the J apanese J ournal of Family Nursing (Kango Kyokai Publisher). Dr. Nojima has served for many years as a board member of the Japanese Association for Research in Family Nursing (JARFN) and was the vice president of JARFN (2004–2013). In 2011, Dr. Nojima was awarded an Innovative Contribution to Family Nursing Award from the J ournal of Family Nursing at the Tenth International Family Nursing Conference in Kyoto, Japan.

Naohiro Hohashi, PhD, RN, PHN (Japan)

Naohiro Hohashi, PhD, RN, PHN, is a Professor of Health Care Nursing and Department Director, Kobe University Graduate School of Health Sciences. Dr. Hohashi has research and practice expertise with a wide range of subjects, from inpatient (at hospitals) to outpatient and at-home (community) and is guiding a program leading to certification in Family Health Nursing in Japan. He has conducted comparative research on how the family is affected by culture and values in Japan, Hong Kong, and North America. Dr. Hohashi has developed the Concentric Sphere Family Environment Model and the Family Environment assessment tool to measure family functioning. Dr. Hohashi currently serves on the Board of Directors of the Japanese Association for Research in Family Nursing (JARFN). In 2014, he was identified as Transcultural Nursing Scholar of the Transcultural Nursing Society. Dr. Hohashi has created multiple collegial relationships with members of the International Family Nursing Association.

2910_Ch12_325-350 05/01/15 11:42 AM Page 331

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Population Health Costs

Upstream interventions that occur before the disease or disability are the most effective means for extending life and influencing spiraling health care costs. In 2012, the Institute of Medicine called for doubling the spending on public health. Finances in medical care are focused on acute care and heroic cures for those already sick and fail to promote balanced treatment of personal or community-based prevention (Institute of Medicine, 2012). Current health care systems are inadequately prepared to address population health needs and this can have serious negative consequences for the nation’s families.

Population-Based Health Actions

A population is a collection of individuals with shared personal or environmental charac- teristics (Minnesota Department of Health, 2001). They might share a common culture, ethnicity, language, values, norms, or risk factors. Individual care only improves care for a single person. A population approach considers broader factors that mold health and lead to illness or disease in the larger population.

Imagine you are a nurse in a critical care unit and for the past 6 months you have noticed more adults being admitted for myocardial infarction (MI). Downstream thinking means that lifesaving measures and medical management take place in an inpatient setting for the person with a MI. Upstream thinking asks: Why are MIs occurring at an increasing rate? Upstream thinking keeps records of those with an MI to see what similarities might explain the increase. Results can help answer the question and could lead to preventing the prob- lem. For example, several years ago New York State implemented a comprehensive smok- ing ban that reduced the number of hospital admissions for MI (Juster et al., 2007). Nurses who think family understand the implications of public health measures and help enact policies to make important changes (Box 12.3).

An example of population-based care that demonstrates the interventions at each level of practice is The Heart of New Ulm project, started in 2008 (Hearts Beat Back, 2010). This project, led and financed by a hospital health care system in Minnesota, used many community partnerships. New Ulm, a small city south of Minneapolis, has many residents of German ancestry. Leaders recognized that beer, brats, and butter were often on the menu of the local families. The project aimed to reduce numbers of heart attacks over 10 years (Hearts Beat Back, 2010). Health-screening programs and a variety of community-based programs were available to assist residents to decrease their risks by improving their diets and physical activity, eliminating tobacco use, and addressing social behaviors. Community education programs (e.g., cooking classes, sharing recipes, grocery shopping tours, tobacco

332 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

BOX 12-3

Population-Based Health Practices

Population health considers three levels of practice to change risky behaviors, improve life expectancy, decrease infant mortality rate, and decrease death rates from preventable diseases and injuries:

● Individual-focused interventions (e.g., vaccinations, lifestyle behaviors) ● Community-focused interventions (e.g., safe air and water, housing, safe places to walk) ● System-focused interventions (e.g., homeland security, relief after disasters, prevention of

type 2 diabetes and obesity and their complications)

2910_Ch12_325-350 05/01/15 11:42 AM Page 332

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

cessation series, chronic disease management classes) were available. Community efforts promoted physical activity (e.g., walking/running events and clubs, dance classes, bike riding, aerobic exercise classes). Environmental changes such as constructing sidewalks to improve walking opportunities, creating parks, and initiating tobacco use restriction policies were instituted. Online resources, blogs, and phone applications were created to support local activities and share successes. They took the perspective that health is a shared community responsibility.

Social Determinants of Health

Population health addresses environmental and lifestyle factors of the community to increase survival and decrease morbidity. Social determinants, both economic and social conditions, influence a population’s state of health (Box 12.4). Risk assessments are a first step toward change; then policies, programs, or projects are planned with strategies for implementation and evaluation (Centers for Disease Control and Prevention, 2011b). Coalitions and part- nerships designed for programs that focus on prevention, health promotion efforts, and medical care interventions must be successful.

Health Care Services

In the United States, health care expenditures were about $2.6 trillion in 2010 compared to $256 billion spent in 1980, and only 3% of this money went for population health (Kaiser Health Foundation, 2012). The question of whether this health care system is actually a sick care system was discussed in a film called “Escape Fire: The Fight to Rescue American Healthcare.” Stakeholders and businesses that benefit from the current system will vigorously work to oppose a transition to a prevention-based system; however, the market, being what it is in this country, will adjust once cost savings and opportunity for other types of service providers increase.

Plans to enact the Affordable Health Care Act (ACA) are under way. The ACA focuses on primary and secondary prevention and lifestyle factors and is designed to benefit all

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 333

BOX 12-4

Health Determinants for Individuals, Families, and Communities

The following factors influence health and illness of individuals, families, and population groups residing in various geographical regions:

● Biology (genetics, family history, physical and mental problems) ● Behaviors (alcohol abuse, tobacco use, lack of regular exercise, level of health literacy, stress

management) ● Social environment (e.g., relationships with family, friends, neighbors, and others; faith

communities; schools; government agencies; safety; availability of resources; culture; media; and public transportation)

● Physical environment (e.g., weather, climate change, buildings, recreational settings, neighborhoods, housing, pollutants, agriculture, toxic substances)

● Access to affordable and quality health care ● Policymaking (e.g., smoking bans, tax increases on tobacco sales, litter ordinances, seatbelt laws)

Source: Healthy People 2020. (2011). Ab out healthy people. Retrieved from http://www.healthypeople.gov/2020/ about/default.aspx

2910_Ch12_325-350 05/01/15 11:42 AM Page 333

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

U.S. citizens with investments in wellness, disease prevention, and public health emergen- cies. The federal government aims to partner with states and communities to control such health problems as obesity, health disparities, tobacco use, vaccine-preventable illnesses, and HIV/AIDS. The goal is to increase the effectiveness of public health and improve access to behavioral health services. Family nurses could lead in the coordination of care across home, community, and institutional settings. Investment in prevention and community pro- grams that increase physical activity, improve nutrition, and prevent tobacco use could mean $5.60 is saved for every dollar spent, a savings of $16 billion in 5 years (Levi, Segal, & Juliano, 2009). Problems of high blood pressure, overweight, and obesity are prevent- able. Obese persons are four times more likely to suffer from progressive knee osteoarthritis and other arthritis. Approximately 20% of all cancer cases can be attributed to obesity (Wolin, Carson, & Colditz, 2010). Currently, it is difficult to have programs or initiatives that focus on preventive care (Mayes & Oliver, 2012). Some raise concerns that you can’t see benefits of preventive actions for years or decades.

The ACA is providing vulnerable or at-risk individuals and families access and payment for medical care (Box 12.5). Some health promotion and disease prevention activities targeted toward the family and community are included. Several primary and secondary prevention services for adults and children are also covered (Box 12.6). Persons covered by Medicare also have preventive services covered (Box 12.7). This is the first time medical coverage for prevention has been legislated.

Differences in Health Care Delivery

Nurses who work within the medical approach focus their care on treating disease and ill- ness in acute care settings for individuals; nurses with a public health approach focus on population needs and societal deficits that may cause disease. Both medical and public health approaches are essential for family-focused care. Nurses need familiarity with med- ical approaches, but also need to recognize ways population care can be integrated. Those

334 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

BOX 12-5

Major Policy Changes in the Affordab le Health Care Act (2010)

The Affordable Health Care Act:

● Prohibits health insurers from refusing coverage based on patients’ medical histories and pre-existing conditions.

● Prohibits health insurers from charging different rates based on patients’ medical histories or gender.

● Repeals insurance companies’ exemption from antitrust laws. ● Establishes minimum standards for qualified health benefit plans. ● Covers adult children under parents’ health insurance until the age of 26. ● Requires most employers to provide coverage for their workers or pay a surtax on the workers’

wages up to 8% . ● Expands Medicaid to include more low-income Americans by increasing Medicaid eligibility

limits to 133% of the federal poverty level and by covering adults without dependents as long as neither population segment falls under the narrow exceptions outlined by various clauses throughout the proposal.

● Provides a subsidy to low- and middle-income Americans to help buy insurance; this change will require most Americans to carry or obtain qualifying health insurance coverage or possibly face a surtax for noncompliance.

2910_Ch12_325-350 05/01/15 11:42 AM Page 334

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 335

BOX 12-6

Preventive Services Under the Affordab le Care Act

After September 23, 2010, the following preventive services are covered without having to pay a copayment, co-insurance, or meet a deductible when provided by an in-network provider: Adults (16 preventive services):

● Abdominal aortic aneurysm (one time screening for men who have ever smoked) ● Alcohol misuse (screening and counseling) ● Aspirin (use for men and women of certain ages) ● Blood pressure screening (all adults) ● Cholesterol screening (adults of certain ages or high risk) ● Colorectal cancer screening (adults over 50) ● Depression (adults) ● Type 2 diabetes (screening for adults with high blood pressure) ● Diet counseling (adults at risk for chronic disease) ● HIV screening (adults at higher risk) ● Immunizations (doses, ages, populations vary) ● Obesity (screening and counseling for all adults) ● Sexually transmitted diseases prevention counseling (adults at high risk) ● Tobacco use (screening all adults and cessation interventions for tobacco users) ● Syphilis screening (adults at higher risk)

Women and pregnant women (private plans began covering August 1, 2012):

● Well-woman visits ● Gestational diabetes screening (for women 24 to 28 weeks pregnant and those at high risk) ● Human papillomavirus (HPV) DNA testing (women 30+ years testing every 3 years) ● Sexually transmitted infections (STI) counseling (sexually active women) ● HIV screening and counseling (sexually active women) ● Contraception and contraceptive counseling (FDA-approved methods, sterilization

procedures, education, and counseling) ● Breastfeeding support, supplies, and counseling (pregnant and postpartum women) ● Interpersonal and domestic violence screening and counseling

Children (27 services):

● Alcohol and drug use (assessments for adolescents) ● Autism screening (18 and 24 months) ● Behavioral assessments (0 to 11 months, 1 to 4 years, 5 to 10 years, 11 to 14 years, 15 to

17 years) ● Blood pressure screening (0 to 11 months, 1 to 4 years, 5 to 10 years, 11 to 14 years, 15 to

17 years) ● Cervical dysplasia screening (for sexually active females) ● Congenital hypothyroidism screening (for newborns) ● Depression (screening for adolescents) ● Developmental screening (children under 3 years and surveillance throughout childhood) ● Dyslipidemia (higher risk for lipid disorders/0 to 11 months, 1 to 4 years, 5 to 10 years, 11 to

14 years, 15 to 17 years) ● Fluoride chemoprevention (supplements for children with no fluoride in water) ● Gonorrhea (preventive medication for the eyes of all newborns) ● Hearing screening (all newborns) ● Height, weight, and body mass index (0 to 11 months, 1 to 4 years, 5 to 10 years, 11 to 14 years,

15 to 17 years) ● Hematocrit or hemoglobin screening ● Hemoglobinopathies (sickle cell screening for newborns) ● HIV screening (adolescents at high risk)

C o n t in u e d

2910_Ch12_325-350 05/01/15 11:42 AM Page 335

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

336 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

BOX 12-6

Preventive Services Under the Affordab le Care Act—cont’d

● Immunization vaccines birth to 18 years (doses, recommended ages, and populations vary) ● Iron supplements (children 6 to 12 months at risk for anemia) ● Lead screening (children at risk of exposure) ● Medical history for all children throughout development (0 to 11 months, 1 to 4 years, 5 to

10 years, 11 to 14 years, 15 to 17 years) ● Obesity screening and counseling ● Oral health risk assessment (0 to 11 months, 1 to 4 years, 5 to 10 years) ● Phenylketonuria (PKU) screening for genetic disorder in newborns ● Sexually transmitted infection (STI) prevention and counseling for adolescents ● Tuberculin testing (0 to 11 months, 1 to 4 years, 5 to 10 years, 11 to 14 years, 15 to 17 years) ● Vision screening for all children

BOX 12-7

Preventive Services Covered b y Medicare

Several preventive services qualify for those insured through a Medicare plan:

● Tobacco cessation counseling ● Screenings (bone mass, cervical cancer, cholesterol, diabetes, HIV, breast cancer, prostate

cancer, others) ● Influenza shots, pneumonia shots, and hepatitis B shots

Medical nutrition therapy to help people manage diabetes or kidney disease

getting medical care return to households and communities and are affected by social de- terminants of health.

Vulnerable Populations and Family Health

Focus on vulnerable populations is needed for global, social, political, economic, and ethical reasons (Shi & Stevens, 2010). These high-risk groups have great health needs due to poor physical and mental health (Shi & Stevens, 2010). As factors relevant to health disparities are considered, three populations are identified (Aday, 1993, 2001):

• Physically vulnerable—high-risk mothers and infants, chronically ill and disabled, persons with AIDS/HIV

• Psychologically vulnerable—mentally ill and disabled, alcohol or substance abusers, those at risk for suicide or homicide

• Socially vulnerable—abusing families, homeless, immigrants, refugees

Vulnerability can be linked with situations such as HIV status and teen pregnancy, expe- riences individuals might have prevented if risky sexual behaviors were avoided (Shi & Stevens, 2010). Moral judgments and political factors play roles in perpetuating some dis- parities. For instance, when condoms or birth control pills are available without shame, many will access them. Gaps in wealth and power can also create vulnerability. Vulnerability is created and resolved through social actions.

2910_Ch12_325-350 05/01/15 11:42 AM Page 336

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

V ulnerability and Public Policy

Vulnerability is influenced by norms, attitudes, beliefs, and values of individuals and fam- ilies living in communities and also by social and health policies. When broad social agreement occurs, points of view become laws at local, state, and national levels. In 2012, 20 grade school children and six staff members were fatally shot at Sandy Hook Elemen- tary School in Newtown, Connecticut. National debates about laws to limit or prohibit gun ownership and screening followed. Although some support laws for background checks and limited magazine rounds of ammunition, many citizens and the National Rifle Association oppose any restrictions to the constitutional right of Americans to bear arms. Opponents of gun control measures cite statistics indicating increased gun violence in com- munities with the most restrictive gun laws. U.S. homicide rates from firearms is 3.3 deaths per 100,000 people yet other countries with restrictive gun laws have much lower rates (e.g., Canada with 0.5 death per 100,000; United Kingdom with 0.1 death per 100,000) (United Nations Office on Drugs and Crimes, 2012). Moral people often disagree about the ways violence should be addressed. Although one group believes reducing ownership of guns will reduce gun violence, an opposing group believes the cure lies in resolving the underlying community problems that encourage violence.

Some societal views about disease are prone to stigma and victim blaming (Mechanic & Tanner, 2007). Links between socioeconomic disparities, life expectancy, and health risks are often viewed as personal deficiencies or attributes (Shi & Stevens, 2010). Individ- uals are blamed for poor health choices. People begin life with diverse circumstances not always under their control. For example, when persons are discharged from an acute setting with a particular medical diagnosis, the same written and oral instructions are often given to college graduates and grade school dropouts. Reading, language, and innate intelligence influence understanding, ability to follow instructions, and care outcomes; instructions need to account for these factors.

Public and Family Health

Public health is defined as “the practice of preventing disease and promoting good health within groups of people, from small communities to entire countries” (American Public Health Association, 2011, para. 1). Public health nursing is defined as “the practice of promoting and protecting the health of populations using knowledge from nursing, so- cial, and public health sciences” (American Public Health Association, 1996, para. 1). In public health, the population is the client, but work with individuals, families, and systems also occurs. Individual care is only a small portion of practice. Public health nurses usually work in a particular geographical region to improve individual and family health. Public health nurses aim to improve the quality of life for a particular population and the greater society. Equity in service delivery despite age, gender, race, and ethnicity is the goal.

Core Functions of Public Health

Three core functions—assessment, policy development, and assurance—guide public health practice that protects individuals and families in a societal context (Institute of Medicine, 1988). Assessment refers to data collection; monitoring population health status, needs, and problems; and dissemination of information. Assessment might identify trends for children with asthma in a particular community and find the reasons for risks. Policy development refers to leadership in developing national, regional, state, and local policies or statutes.

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 337

2910_Ch12_325-350 05/01/15 11:42 AM Page 337

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Nurses work toward policy development to eliminate environmental factors that make asthma worse. An upstream focus is to decrease air pollutants. Assurance refers to making sure that high-priority services are available. Nurses who think family measure the useful- ness and effectiveness of intervention programs. Assurance makes sure public health work- ers and nurses provide competent care. Besides these core functions, 10 essential public health services also serve to guide practice (Box 12.8).

Social Determinants That Influence Family Health

Social determinants include socioeconomic factors such as social class, family income, levels of education, and employment. These factors influence the affordability and location of where families live. Where people live affects other life aspects, such as quality of schools, per-hour wages, safety, violence, and food access. Overcrowding and unsanitary conditions can increase exposure to diseases. Air pollution increases risks for asthma and lung disease.

Probably one of the best ways to influence good health is good nutrition. Several societal factors work against good nutrition and include lack of access to nutrient-dense foods, so- cial relationships and marketing that influence poor food choices, use of processed and prepackaged foods, routine snacking, and busy lifestyles whereby families rarely eat meals together and are likely to eat meals outside the home. Families who share fewer than three mealtimes a week have poorer health outcomes (Neumark-Sztainer, Eisenberg, Fulkerson, Story, & Larson, 2008). Nurses who think family can help families improve nutrition by teaching the basics of good nutrition, label reading, meal planning, food shopping, budg- eting, preparing fruits and vegetables, and home cooking. Surprisingly, in some households no one knows how to prepare meals without prepackaged, processed foods.

Widespread concerns about mental health exist. According to the National Institute of Mental Health (NIMH), some form of mental illness affects about 60 million Americans (1 in 4 adults; 1 in 10 children). Worldwide, 4 of the 10 leading causes of disability are linked with mental disorders. The World Health Organization (WHO) predicts that by 2020, major depressive illness, including depression, bipolar disorder, and borderline personality disorder, will be the leading cause of disability for the world’s women and

338 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

BOX 12-8

Ten Essential Pub lic Health Services

The strength of the public health service rests on its capacity to deliver effectively the following services:

● Monitor health status to identify community health problems. ● Diagnose and investigate health problems and hazards in the community. ● Inform, educate, and empower people about health issues. ● Mobilize community partnerships to identify and solve health problems. ● Develop policies and plans that support individual and community efforts. ● Enforce laws and regulations that protect health and ensure safety. ● Link people to needed personal health services and ensure the provision of health care when

otherwise unavailable. ● Ensure a competent public health and personal health care workforce. ● Evaluate effectiveness, accessibility, and quality of personal and population-based health

services. ● Research for new insights and innovative solutions to health problems.

2910_Ch12_325-350 05/01/15 11:42 AM Page 338

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

children. Children and adolescents are often affected with autism, attention deficit dis- order, anxiety disorders, eating disorders, and psychosis (National Institute of Mental Health, 2013). Without adequate treatment, the social consequences are overwhelming. Costs linked with untreated mental illness are shocking. Stigma and misunderstandings about mental disorders lead to delays in diagnosis and care, particularly for the uninsured, minority, low income, and elderly groups (National Institute of Mental Health, 2005). Families are generally ill equipped to manage severe conditions. Stigma often leads to resistance to treatment, resulting in poorly managed conditions and school failures, home- lessness, physical or emotional abuse, alcohol and substance abuse, unstable employment, and crime (National Alliance of Mental Health, 2005). Nurses who think family consider social determinants when they give individual and family care.

Theoretical Frameworks for Family and Societal Health Care

Nurses can use theoretical models to address such qualities as resilience (Rew & Horner, 2003), health promotion (Pender, Murdaugh, & Parsons, 2011), and self-efficacy (Bandura, 1997). Other frameworks can address community and vulnerability (Fig. 12.1). For exam- ple, the Vulnerability Model (Flaskerud & Winslow, 1998) identifies resource availability, relative risks, and health status. Community unemployment, poverty, violence and crime, schools, community organizations, and availability of grocery stores and farmers’ markets need to be examined. The Chronic Care Model (CCM) is a way to examine system inter- actions linked with disease management (Wagner, Austin, & Von Korff, 1996). Research using the CCM has demonstrated some improvement in care outcomes (Wallace, 2011).

Nurses who think family know household and social factors need to be assessed. When care is planned, wellness, health promotion, prevention, and care management issues can be considered based upon vulnerability. Students and nurses often recognize individual responsibility without considering social implications. Failure to include social determi- nants ignores circumstances and living environments and may prevent selection of the most effective interventions. Review the Family Circle case and talk with others in your class about the choices, priorities, and decisions that need to be made (Box 12.9).

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 339

FIGURE 12-1 Family-focused care is necessary to meet the needs of vulnerable populations.

2910_Ch12_325-350 05/01/15 11:42 AM Page 339

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

The Role of the Government in Population Health and Its Financing

The idea that government should share some responsibility for health care has a long his- tory. It goes back at least to the Greek city-states, where citizens’ taxes supported public physicians. The idea of compulsory participation in a health insurance system is old. In 1798, a Marine Hospital Service was created and owners of merchant ships contributed 20 cents a month into a sickness fund for each employed seaman (Starr, 1982). In the 19th century, labor unions required workers to join relief funds to cover disease and injury treat- ment. Some payers, policy makers, providers, and purchasers have vested interests in per- petuating the current medical delivery system that favors treatment over prevention. Leadership is needed to help citizens identify benefits of focusing on health promotion and disease prevention. Family nurses can do this with individuals as health counseling and education are tailored to household and community needs.

Department of Health and Human Services

In the United States, the Department of Health and Human Services (DHHS) is the main agency dealing with the issues of poverty, vulnerability, and health disparities. An Office of the Secretary and 11 operating divisions provide a wide range of health services (Box 12.10). These agencies perform many tasks and services such as research, food and drug safety testing, and grant issuing. About half of U.S. citizens receive some form of government-supported health care.

The Surgeon General

In the United States, the Surgeon General is appointed by the president and is the head of the Public Health Service Commission Corps. This is the most widely recognized and respected voice of public health issues. The Surgeon General sees that the public is provided with information about personal health and the nation’s health, reports important medical findings, suggests steps that should be taken to increase health, and oversees the nation’s 6,500 uniformed health officers who serve around the world.

Health Resources and Services Administration

Each state and most cities in the United States have their own Department of Health but the federal government takes the lead in defining health activities and goals to improve the nation’s health. The Health Resources and Services Administration (HRSA) is made

340 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

BOX 12-9

Family Circle

Last night you heard a national evening news report that caught your attention. This morning, the headline of your local newspaper contains the same statement in large letters. You read the headline: “For the first time, a generation of Americans is expected to live shorter lives than their parents.”

1. What kinds of things do you think this article would disclose? 2. What do these headlines mean to you, your family, and Americans? 3. What upstream family and population efforts are needed to turn this tide? 4. What actions might a family or population-focused nurse take to prevent the potential

downstream outcomes?

2910_Ch12_325-350 05/01/15 11:42 AM Page 340

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

up of six bureaus and 10 offices (Box 12.11). Several operating divisions of HRSA provide leadership and financial support (Table 12.2). HRSA grants assist uninsured, those with HIV/AIDS, pregnant women, mothers, and children. Financial supports to train health professionals and improve rural community care systems target four goals:

1. Improve access to quality care and services. 2. Strengthen the health workforce. 3. Build healthy communities. 4. Improve health equity.

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 341

BOX 12-10

Department of Health and Human Services Offices

Agencies of DHHS: ● Health Resources and Services Administration (HRSA) ● Food and Drug Administration (FDA) ● Administration on Aging (AoA) ● National Institutes of Health (NIH) ● Centers for Disease Control and Prevention (CDC) ● Substance Abuse and Mental Health Services Administration (SAMHSA) ● Indian Health Services (IHS) ● Office of the Inspector General (OIG) ● Agency for Healthcare Research and Q uality (AHRQ ) ● Administration for Children and Families (ACF) ● Agency for Toxic Substances and Disease Registry (ATSDR) ● Centers for Medicare and Medicaid Services (CMS)

BOX 12-11

Bureaus and Offices of the Health Resources and Services Administration

The Health Resources and Services Administration has six bureaus:

● Bureau of Clinician Recruitment and Service ● Bureau of Health Professionals ● Bureau of Primary Health Care ● Healthcare Systems Bureau ● HIV/AIDS Bureau ● Maternal and Child Health Bureau

The Health Resources and Services Administration has 10 offices:

● Office of Planning, Analysis, and Evaluation ● Office of Rural Health Policy ● Office of Regional Operations ● Office of Special Health Affairs

● Office of Health Equity ● Office of Global Health Affairs ● Office of Strategic Priorities ● Office of Health Information, Technology, and Q uality ● Office of Emergency Preparedness and Continuity of Operations

● Office of Women’s Health

2910_Ch12_325-350 05/01/15 11:43 AM Page 341

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

342 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

TABLE 12-2 O perating Divisions of th e Department of H ealth and H uman Services

DIVISION PURPOSE

Administration for Children and Families (ACF)

Administration on Aging (AoA)

Agency for Healthcare Research and Q uality (AHRQ )

Agency for Toxic Substances and Disease Registry (ATSDR)

Centers for Disease Control and Prevention (CDC)

Centers for Medicare and Medicaid Services (CMS)

Food and Drug Administration (FDA)

Health Resources and Services Administration (HRSA)

Indian Health Service (IHS)

National Institutes of Health (NIH)

Office of the Inspector General (OIG)

Substance Abuse and Mental Health Services Administration (SAMHSA)

Promotion of the economic and social well-being of families, children, individuals, and communities

Development of a comprehensive, coordinated, and cost- effective system of home and community-based services that helps elderly individuals maintain their health and independence in their homes and communities

Improvement of the quality, safety, efficiency, and effectiveness of health care for all Americans

Assessment of hazardous waste sites, health consultation concerning specific hazardous substances, response to releases of hazardous substances, and education and training concerning hazardous substances

Creation of the expertise, information, and tools that people and communities need to protect their health through health promotion; prevention of disease, injury, and disability; and preparedness for new health threats

Administration of Medicare, Medicaid, and the Children’s Health Insurance Program

Regulation of medical products, tobacco, food safety, global regulatory operations and policies

Improvement of access to quality health care services for people who are uninsured, isolated, or medically vulnerable through strengthening the health workforce, building healthy communities, and improving health equity

Promotion of the physical, mental, social, and spiritual health of American Indians and Alaska Natives to the highest possible level

Discovery and dissemination of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability

Performance of audits, evaluations, investigations, and law enforcement efforts relating to HHS programs and operations

Promotion of economy, efficiency, and effectiveness of HHS programs and prevention or identification of fraud, waste, and abuse

Reduction of the impact of substance abuse and mental illness on America’s communities

The government sponsors programs to ease the effects of race, class, educational sta- tus, and poverty on health outcomes. Examples include the Healthy People Initiative, Medicare and Medicaid programs, Head Start, and the Children’s Health Insurance Program.

2910_Ch12_325-350 05/01/15 11:43 AM Page 342

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Healthy People 20 20

The United States has goals and objectives that aim to decrease and eliminate illness and health care disparities. The Healthy People Initiative has produced four national reports on the health status of the nation and proposes health objectives for 10-year periods. Progress has been made in reducing coronary heart disease, cancer, incidence of AIDS, and syphilis. Healthy People 2020 (2011) includes four overarching goals aligned with public health, and none include direct medical care delivery (Box 12.12). Attainment of these goals would increase the overall health of the diverse U.S. citizens. Nurses who think family are aware of these objectives and include them in their practice. Family nurses know that their role includes using time with individuals as a way to target disparities and vulnera- bilities linked with family units.

Medicare, Medicaid, and O ther B enefits

Since the 1960s, laws have established several large health care programs. The programs provide health care access and payment for special groups who might otherwise forfeit med- ical care. In 1965, Medicare funding was signed into law to provide health care for citizens over age 65. Medicare Part A covers inpatient hospital care, hospice, home health care, and skilled nursing. Medicare Part B covers doctors, health provider services, home health, and durable medical equipment. Medicare Part C offers health care plans from private insurers. Medicare Part D helps cover the cost of prescription drugs. Many people do not pay for Medicare Part A, but most pay for Medicare Parts B, C, and D. The monthly Social Security income varies based on wages earned and age at the time of retirement. Intended only as a supplement to retirement income, it provides a meager living for those with no savings or pensions, and for those individuals health care coverage takes a large portion.

In 1965, Medicaid, another national health program for low-income persons, was cre- ated. State participation in Medicaid is voluntary; however, all states have participated since 1982. In some states, Medicaid is subcontracted to private companies, but others directly pay providers. States and counties vary in Medicaid provision but in most cases the benefit is closely regulated, time limited, and intended for the poor. Some families have difficulty finding medical providers or dentists who will accept Medicaid because reim- bursement to providers in some areas does not cover the cost of providing the care. Sick individuals often use high-cost local emergency departments as a safety net. Pharmaceutical choices and payments are regulated by a state formulary that identifies what can or cannot be prescribed.

In 1930, the Veterans Health Administration was established and is the largest integrated health care system. The Veterans Health Administration is divided into regions with

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 343

BOX 12-12

Healthy People 2020 Goals

Healthy People 2020 tracks 1,200 objectives in 42 topic areas aimed at accomplishing four goals:

● Attain high-quality, longer lives free of preventable disease, disability, injury, and premature death

● Achieve health equity, eliminate disparities, and improve the health of all groups ● Create social and physical environments that promote good health for all ● Promote quality of life, healthy development, and healthy behaviors across all life stages

2910_Ch12_325-350 05/01/15 11:43 AM Page 343

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

medical centers and community-based outpatient clinics. Most veterans receive services free or with modest copayments. In 1921, the Snyder Act provided health services to Native American tribes. Today, the Indian Health Service (IHS), a division of the DHHS, has an annual appropriation near $4 billion and provides care to nearly 2 million Native Ameri- cans (Shi & Stevens, 2010). The IHS provides care for well over 500 tribal groups. Native Americans also qualify for health care funding through Medicare and Medicaid.

State Children’s Health Insurance Program

The state Children’s Health Insurance Program (CHIP) was enacted as part of the Balanced Budget Act of 1997 (Centers for Medicare and Medicaid Services, 2012). CHIP provides health coverage for children whose families earned too much to qualify for Medicaid benefits but who were still uninsured because of limited income. Like Medicaid, the federal government matches state spending; however, these funds are capped nationwide and each state receives an allotment. Millions of children are enrolled in Medicaid, and CHIP extends coverage to millions more. Yet, many eligible children are still not covered. Family-focused care implies that the complex needs, abilities, and availability of resources will be considered (Box 12.13).

Health Policy Development and Nurses’ Roles

Public policies aim to influence individual, family, population, and institutional behaviors. Health policy begins with agenda setting to guide disease prevention and health promotion initiatives at the local, state, and national levels (Milstead, 2013). Governments respond

344 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

BOX 12-13

Evidence-Based Family Nursing

Clear communication with persons who have low literacy or low health literacy is important. Although information abounds and is easily accessible on the Internet, it is important that those needing specific information can understand it. A project titled Get a Head Start on Asthma developed a family-centered Web-based asthma education program for an urban multisite Head Start program. This is a federally funded child development program for low-income culturally diverse families with preschool children. A partnership was formed with low-income English, Hmong, and Spanish-speaking parents of preschool children (ages 3–5 years). Four project phases were assessment, review of 300 existing Web sites, development of a CD-ROM, and Web site development. Four literacy areas were addressed: functional literacy (acceptable reading level), language literacy (translation), health literacy (simple terminology), and computer literacy (ease of use, access). The goal was to address literacy levels of different families. Many knowledge gaps about asthma were identified. Many families did not have access to computers or the Internet or have any experience using computers. Web site design considered graphic layouts, color, graphics, aesthetics, information density, ease of navigation, and abilities with computer technologies. Asthma education was developed for diverse cultural and linguistic backgrounds. Parents needed support to gain better computer literacy skills. Study findings indicated that Web-based interventions have potential for family nurses to assist families with children with asthma, but also to help families with other chronic conditions.

Source: Garwick, A., Seppelt, A., & Belew, J. L. (2011). Addressing family health literacy to create a family-centered culturally relevant web-based asthma education project. In E. K. Svavarsdottir & H. Jonsdottir (Eds.), Family nursing in action (pp. 251–266). Reykjavik, Iceland: University of Iceland Press.

2910_Ch12_325-350 05/01/15 11:43 AM Page 344

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

to identified problems with legislation, regulation, and programs. Government officials have responsibility to safeguard public health, but local citizens can engage in advocacy that shapes health policy. Nurses can have strong voices and communicate needs to local representatives and elected officials.

The world of health care is a vineyard of intertwined systems that rarely, if ever, interact or communicate with one another. Policies are written by government agencies, independ- ent provider groups, foundations, and advocacy groups. The policy process includes pro- gram implementation and involves such national agencies as the Centers for Medicare and Medicaid Services (CMS). Other state and local health departments, hospitals, and health care delivery systems are part of the process.

Changes in public attitudes and values are often the impetus for policy changes. The Centers for Disease Control and Prevention (2011a) reports that tobacco use is responsible for more deaths than HIV infection, illegal drug use, alcohol use, motor vehicle injuries, suicides, and murders combined. The CDC considers tobacco use to be the leading pre- ventable cause of death in the United States. Although no federal bans have been issued on smoking or production of tobacco products, most states have established laws that ban tobacco use in workplaces, restaurants, businesses, and bars, and on college campuses. Some states have increased their tobacco taxes, making it more difficult to continue tobacco use or for teens to buy tobacco products (U. S. Department of Health and Human Services, 2012). Federal and state laws limit the sale of tobacco products to adults. Yet, the American people continue to use tobacco products, often starting use as early as adolescence.

Public health and other nurses can provide information pertinent to public policies at a variety of stages (Milstead, 2013). Nursing is viewed as one of the most trusted occupa- tional groups. Legislators are willing to meet with and listen to nurses, especially through annual state and national Nursing Day on the Hill venues. Nurses who think family can be strong advocates for the nation’s families. Legislators often have nurses on their staffs to help answer policy issues from their constituents. Registered nurses and student nurses can write their legislators about pending legislation affecting nurses and health care. Organizations such as the American Nurses Association, the National League for Nursing, the American Association of Colleges of Nursing, and the National Student Nurses Asso- ciation often send newsletters and e-mails asking nurses to write to their senators and rep- resentatives about pending legislation. Nurses who think family can be advocates for family health and emphasize the links with individual and community needs.

Family nurses can learn about policy through formal coursework and education. It is useful to stay abreast of current issues affecting individual and family health. Policy in- ternships in Washington, D.C., are available and one can become a member of an advocacy group. Some believe that population health should be a key concern linked to all national policies (Mayes & Oliver, 2012). This means that all policies would focus on the specific ways health needs should be included or addressed. Family nurses can be change agents and important advocates in bringing concerns to local government and regional represen- tatives. Civic responsibility can entail knowledge of one’s neighborhood and acting for positive health outcomes where you live.

Chapter Summary

This chapter discusses community and population perspectives. Ways in which individ- ual, family, and societal health are linked are described. Nurses caring for individuals in acute and primary care settings can easily overlook the ecological factors and influ- ences of larger environments. Thinking family implies awareness of how the ecological

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 345

2910_Ch12_325-350 05/01/15 11:43 AM Page 345

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

contexts of neighborhood, community, and society are integral parts of health and illness risks. As individuals and families live in their households, they meet the upstream op- portunities to promote health and prevent disease. People are influenced by many factors outside their volition. Levels of motivation, locus of control, and other personal factors play health and illness roles, but environmental and social factors outside their control are also influential. Nurses who think family recognize that they can empower those they meet to consider the larger picture of what makes people healthy and ways they get sick. If the goal is family-focused care, then it is essential for nurses to see that fam- ilies are equipped to think beyond “medicalized care” as their only resource. Family- focused nurses are adept at assisting individuals to access what they need in their community. Family nurses can teach families how to advocate for fair distribution of health services. Family nurses who are knowledgeable about the community and popu- lation health can be leaders in moving away from a sick care system.

REFERENCES

Aday, L. A. (1993). Equity, accessibility, and ethical issues—Is the U. S. health care reform debate asking the right questions? American Behavioral Scientist, 36(6), 724–740.

Aday, L. A. (2001). At risk in America: The health and health care needs of vulnerable populations in the United States (2nd ed.). San Francisco: Jossey-Bass.

American Nurses Association. (2007). Public health nursing: Scope and standards of practice. Silver Spring, MD: Author.

American Public Health Association. (1996). Definition and role of public health nursing. Washington, DC: Author.

American Public Health Association. (2011). What is public health? Our commitment to safe, healthy communities. Retrieved from http://www.apha.org/NR/rdonlyres/C57478B8-8682-4347-8DDF- A1E24E82B919/0/what_is_PH_May1_Final.pdf

Anderson, A. F., Carson, C., Watt, H. C., Lawlor, D. A., Avlund, K., & Ebrahim, S. (2008). Life- course socio-economic position, area deprivation and type 2 diabetes: Findings from the British women’s heart and health study. Diabetic Medicine, 25(12), 1462–1468.

Avendano, M., Glymour, M. M., Banks, J., & Mackenbach, J. P. (2009). Health disadvantage in U.S. adults aged 50 to 74 years: A comparison of the health of rich and poor Americans with that of Europeans. American Journal of Public Health, 99(3), 540–548.

Baker, L. C., Fisher, E. S., & Wennberg, J. E. (2008). Variations in hospital resource use for Medicare and privately insured populations in California. Health Affairs, 27(2), 123–134. Epub 2008 Feb 12.

Bandura, A. (1997). Self-efficacy: The exercise of control. New York: W. H. Freeman. Baum, A., Garofalo, J. P., & Yali, A. M. (1999). Socioeconomic status and chronic stress: Does stress

account for SES effects on health? Annals of New York Academy of Sciences, 896, 131–144. Bell, S. E., & Whiteford, M. B. (1987). Tai Dam health care practices: Asian refugee women in Iowa.

Social Science and Medicine, 24(4), 317–325. Bird, C. E., Seeman, T., Escarce, J. J., Basurto-Davila, R., Finch, B. K., Dubowitz, T., Heron, M., . . .

Lurie, N. (2010). Neighborhood socioeconomic status and biological “wear & tear” in a nation- ally representative sample of U.S. adults. Journal of Epidemiology and Community Health, 64(10), 860–865.

California Newsreel. (2008). Unnatural causes: Is inequality making us sick? Retrieved from http://www.unnaturalcauses.org

Centers for Disease Control and Prevention. (2011a). Smoking and tobacco use: Tobacco-related mortality. Retrieved from http://www.cdc.gov/tobacco/data_statistics/fact_sheets/health_effects/ tobacco_related_mortality

Centers for Disease Control and Prevention. (2011b). Healthy places: Health impact assessments. Retrieved on from http://www.cdc.gov/healthyplaces/hia.htm

Centers for Disease Control and Prevention. (2013). Leading causes of death. Retrieved from http://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm

346 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

2910_Ch12_325-350 05/01/15 11:43 AM Page 346

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Centers for Medicare and Medicaid Services. (2012). Financing and reimbursement. Retrieved on from http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Financing-and- Reimbursement/Financing-and-Reimbursement.html

Central Intelligence Agency. Country comparison life expectancy at birth. Retrieved from https://www.cia.gov/library/publications/the-world-factbook/rankorder/2102rank.html

Danaei, G., Ding, E. L., Mozaffarian, D., Taylor, B., Rehm, J., Murray, C. J. L., & Ezzati, M. (2009). The preventable causes of death in the United States: Comparative risk assessment of dietary, lifestyle, and metabolic risk factors. PLOS Medicine 6(4), e1000058. doi:10.1371/journal.pmed.100005

Doutrich, D., Arcus, K., Dekker, L., Spuck, J., & Pollock-Robinson, C. (2012). Cultural safety in New Zealand and the United States: Looking at a way forward together. Journal of Transcultural Nursing, 23(2), 143–150.

Fadiman, A. (1997). The spirit catches you and you fall down. New York: Farrar, Straus, & Giroux. Flaskerud, J. H., & Winslow, B. W. (1998). Conceptualizing vulnerable populations health-related

research. Nursing Research, 47(2), 69–78. Garwick, A., Seppelt, A., & Belew, J. L. (2011). Addressing family health literacy to create a family-

centered culturally relevant web-based asthma education project. In E. K. Svavarsdottir & H. Jonsdottir (Eds.), Family nursing in action (pp. 251–266). Reykjavik, Iceland: University of Iceland Press.

Grace, P. J. (2009). Nursing ethics and professional responsibility. Sudbury, MA: Jones & Bartlett. Hannan, E. L., Wu, C., & Chassin, M. R. (2006). Differences in per capita rates of revascularization

and in choice of revascularization procedure for eleven states. BMS Health Services Research, 16(6), 35. Published online March 16, 2006. doi:10.1186/1472-6963-6-35

Health Resources and Services Administration. (1995). Medically underserved areas and populations (MUA/Ps): Guidelines for MUA and MUP designation. Retrieved from http://bhpr.hrsa.gov/shortage/ muaps/index.html

Healthy People 2020. (2011). About healthy people. Retrieved from http://www.healthypeople.gov/ 2020/about/default.aspx

Hearts Beat Back. (2010). The heart of New Ulm. Retrieved from http://www.heartsbeatback.org/ project

Institute of Medicine. (1988). The future of the public’s health in the 21st century. Washington, DC: The National Academies Press.

Institute of Medicine, Board on Population Health and Public Health Practice. (2012). For the public’s health: Investing in a healthier future. Retrieved from http://iom.edu/Reports/2012/For-the- Publics-Health-Investing-in-a-Healthier-Future.aspx

Juster, H. R., Loomis, B. R., Hinman, T. M., Farrelly, M. C., Hyland, A., Bauer, U. E., & Birkhead, G. S. (2007). Declines in hospital admissions for acute myocardial infarction in New York state after implementation of a comprehensive smoking ban. American Journal of Public Health, 97, 2035–2039. doi:10.2105/AJPH.2006.099994

Kaiser Health Foundation. (2012). National health expenditures, 2010. Retrieved from http://www.kaiseredu.org/Issue-Modules/US-Health-Care-Costs/Background-Brief.aspx

Leininger, M. M. (1970). Nursing and anthropology: Two worlds to blend. New York: Wiley. Leininger, M. M. (1990). Ethnomethods: The philosophic and epistemic bases to explicate transcul-

tural nursing knowledge. Journal of Transcultural Nursing, 1(2), 40–51. Levi, J., Segal, L. M., & Juliano, C. (2009). Prevention for a healthier America: Investments in disease

prevention yield significant savings, stronger communities. Washington, DC: Trust for America’s Health.

Mayes, R., & Oliver, T. R. (2012). Chronic disease and the shifting focus of public health: Is prevention still a political lightweight? Journal of Health Politics, Policy, and Law, 37(2), 181–200.

Mechanic, D., & Tanner, J. (2007). Vulnerable people, groups, and populations: Societal view. Health Affairs, 26(5), 1220–1230.

Milstead, J. A. (2013). Health policy and politics: A nurse’s guide (4th ed.). Sudbury, MA: Jones & Bartlett.

Minnesota Department of Health. Division of Community Health. (2001). Public health inter- ventions: Applications for public health nursing practice. St. Paul: Minnesota Department of Health.

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 347

2910_Ch12_325-350 05/01/15 11:43 AM Page 347

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Mokdad, A. H., Marks, J. S., Stroup, D. F., & Geberding, J. L. (2004). Actual causes of death in the United States, 2000. Journal of the American Medical Association, 291, 1238–1245.

Murphy, S. L., Xu, J., & Kochanek, K. D. (2012). Deaths: Preliminary data for 2010. National Vital Statistics Reports, 60(4), 1–69.

National Institute of Mental Health (NIMH). (2005). Mental illness exacts heavy toll, beginning in youth. Retrieved from http://www.nimh.nih.gov/science-news/2005/mental-illness-exacts-heavy- toll-beginning-in-youth.shtml

National Institute of Mental Health (NIMH). (2013). Child and adolescent mental health: Statistics. Retrieved from http://www.nimh.nih.gov/statistics/index.shtml

Neumark-Sztainer, D., Eisenberg, M. E., Fulkerson, J. A., Story, M., & Larson, N. I. (2008). Family meals and disordered eating in adolescents—Longitudinal findings from project EAT. Archives of Pediatrics and Adolescent Medicine, 162, 17–22.

Papps, E., & Ramsden, I. (1996). Cultural safety in nursing: The New Zealand experience. Interna- tional Journal of Qualitative Health Care, 8(5), 491–497.

Pender, N., Murdaugh, C., & Parsons, M. (2011). Health promotion in nursing practice (6th ed.). Upper Saddle River, NJ: Pearson Prentice Hall.

Polaschek, N. R. (1998). Cultural safety: A new concept in nursing people of different ethnicities. Journal of Advanced Nursing, 27(3), 452–457.

Powers, M., & Faden, R. (2006). Social justice: The moral foundations of public health and health policy. New York: Oxford University Press.

Rew, L., & Horner, S. D. (2003). Youth resilience framework for reducing health-risk behaviors in adolescents. Journal of Pediatric Nursing, 18(6), 379–388.

Richardson, R., & Carryer, J. (2005). Teaching cultural safety in a New Zealand nursing education program. Journal of Nursing Education, 44(5), 201–208.

Robert Wood Johnson Foundation. (2009). Paradox of plenty. Retrieved from http://www.rwjf.org/ pr/product.jsp?id=45108

Robert Wood Johnson Foundation. (2011). How does an investment in prevention improve public health? Retrieved from http://www.rwjf.org/healthpolicy/publichealth/product.jsp?id=73313

Schim, S. M., Benkert, R., Bell, S. E., Walker, D. S., & Danford, C. A. (2007). Social justice: Added metaparadigm concept for urban health nursing. Public Health Nursing, 24(1), 73–80.

Schim, S. M., Doorenbos, A. Z., Miller, J., & Benkert, R. (2003). Development of a cultural compe- tence assessment instrument. Journal of Nursing Measurement, 11(1), 29–40.

Schneider, M. (2014). Introduction to public health (4th ed.). Sudbury, MA: Jones & Bartlett. Shi, L., & Stevens, G. D. (2010). Vulnerable populations in the United States (2nd ed.). San Francisco,

CA: Jossey-Bass. Song, Y., Skinner, J., Bynum, J., Sutherland, J., Wennberg, J. E., & Fisher, E. S. (2010). Regional

variations in diagnostic practices. New England Journal of Medicine, 363(1), 45–53. Epub 2010 May 12.

Starr, P. (1982). The social transformation of American medicine. New York: Basic Books. Tripp-Reimer, T. (1982). Barriers to health care: Variations in interpretation of Appalachian client

behavior by Appalachian and non-Appalachian health professionals. Western Journal of Nursing Research, 4(2), 179–191.

Tripp-Reimer, T., & Thieman, K. (1981). Traditional health beliefs/practices of Vietnamese refugees. Journal of the Iowa Medical Society, 71(12), 533–535.

United Nations Office on Drugs and Crimes (UNODC) (2012). UNODC crime statistics. Retrieved from http://www.unodc.org/unodc/en/data-and-analysis/homicide.html

United States Department of Health and Human Services. (2012). Preventing tobacco use among youth and young adults: A report of the Surgeon General. Retrieved from http://www.surgeon- general.gov/library/preventing-youth-tobacco-use/full-report.pdf

Wagner, E. H., Austin, B. T., & Von Korff, M. (1996). Organizing care for patients with chronic illness. Milbank Quarterly, 74(4), 551–544.

Wallace, P. (2011). Population health in action: Successful models. In D. B. Nash, J. Reifsnyder, R. J. Fabius, & V. P. Pracilio (Eds.), Population health: Creating a culture of wellness (pp. 241–256). Sudbury, MA: Jones & Bartlett.

348 CHAPTER 12 ● Family-Focused Care to Meet Population Needs

2910_Ch12_325-350 05/01/15 11:43 AM Page 348

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Wennberg, J. E., Bronner, K., Skinner, J. S., Fisher, E. S., & Goodman, D. C. (2009). Inpatient care intensity and patients’ ratings of their hospital experiences. Health Affairs, 28(1), 103–112.

Wolin, K. Y., Carson, K., & Colditz, G. A. (2010). Obesity and cancer. Oncologist, 15(6), 556–565. Published online May 27, 2010. doi:10.1634/theoncologist.2009-0285 PMCID: PMC3227989.

Wright, L., & Leahy, M. (2013). Nurses and families: A guide to family assessment and intervention (6th ed.). Philadelphia: F. A. Davis.

CHAPTER 12 ● Family-Focused Care to Meet Population Needs 349

2910_Ch12_325-350 05/01/15 11:43 AM Page 349

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

2910_Ch12_325-350 05/01/15 11:43 AM Page 350

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:32.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Family-Focused Care and Chronic Illness Sharon A. Denham

C H A P T E R 11

C H A P T E R O B J E C T I V E S

1. Explain chronic illness experiences from individual and family perspectives. 2. Examine special family concerns associated with chronic disease management. 3. Describe ways nurses prepare families to satisfy various member needs associated with chronic

illness. 4. Discuss management of family stressors associated with living with uncertainty. 5. Use family-focused care to support and overcome barriers when child and adult members have a

chronic illness.

C H A P T E R C O N C E P T S

● Care coordination ● Chronic illness ● Collaboration ● Family health routines

● In-time ● Non-normative ● Normative ● Off-time

Introduction

This chapter considers the complex care needs linked with chronic illness and families’ di- verse experiences in living with chronic illness over time. Chronic conditions are not static; they often change. A major goal is self-management so that complications are delayed or prevented. Although nurses are often well prepared to address the acute conditions, many are less familiar with long-term needs related to chronic conditions. Acute illnesses usually have rapid onset and symptoms are often short-lived. Those suffering with an acute illness may heal and resume prior activities, suffer from disabilities or limitations, or die. Acute conditions disrupt life, can be traumatic, and put stress on family members, but situations are usually temporary and more quickly resolved.

On the other hand, chronic health conditions typically last more than a year and have no cure. The World Health Organization (2002) defines chronic disease as health problems that require ongoing management over a period of years or decades. Common chronic con- ditions are asthma, diabetes, cerebral palsy, multiple sclerosis, and cancer. Chronic condi- tions often require unusual attention and intrude into all aspects of family life. Many can

293

2910_Ch11_293-324 05/01/15 11:37 AM Page 293

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

be self-managed with medications and lifestyle changes. Persons with chronic conditions often live active healthy lives for many years. Persons living with conditions, such as asthma or diabetes can mostly live healthy lives when diseases and risk factors are managed. How- ever, some chronic conditions such as multiple sclerosis, amyotrophic lateral sclerosis, and lupus can progressively worsen over time. Persons with disabilities can be severely chal- lenged to accomplish some daily tasks and some require a continuous caregiver. Many vet- erans of the Vietnam, Afghanistan, or Iraqi wars experienced severe injuries and live with significant physiological limitations often accompanied by post-traumatic stress syndrome. Veterans may live decades with needs that tax a family’s abilities and resources.

Although nurses often agree that family is important in chronic care management, their formal education does not always prepare them to see needs of family units. Caregiver support is often discussed for parental care of dependent children or dying persons, but less attention is given to the chronic care needs of adults. Nurses often think family with the elderly population or conditions such as Alzheimer’s disease. Less attention is given to chronic con- ditions such as Down syndrome where persons can live into their 50s and outlive aged parents. Family needs of decades or a lifetime with a chronic condition are rarely considered. Changes with developmental stages and adaptations over time are needed. Maintaining high-quality family household life can deplete resources with some types of chronic illness.

Nursing concerns and system matters potentially linked with chronic care needs are ad- dressed using the Family Health Model (Denham, 2003). A case study of the Zimanske family, a family living with a rare genetic condition, is threaded throughout this chapter. Their story provides ways to view multiple concerns associated with chronic disorders. Their experience begins at their son’s birth and continues through diagnosis, disease pro- gression, and after his death. Their story demonstrates how diagnosis of a chronic condition saturated their family life. Chronic conditions change, require different forms of attention, and can create hardships. This chapter describes ways family unit problems can be paired with member’s chronic conditions.

Defining Chronic Illness and the Associated Needs

Care of chronic illness is part of daily life for many families across the nation and through- out the world. Getting older makes the odds of having two or more conditions greater. In 2005, chronic disease was the cause of 70% of Americans’ deaths and accounted for more than 50% of all deaths (Kung, Hoyart, Xu, & Murphy, 2008). When many individuals live with multiple chronic conditions, the overall health of the nation’s people is worsened (Institute of Medicine, 2012). Threats can be enormous when multiple members from a single household have several chronic conditions.

In the United States, health is generally viewed using a deficit perspective. Morbidity and mortality rates are key indicators of a nation’s health. Health is a construct that includes phys- ical, mental, spiritual, and social dimensions. With family and population health we look be- yond merely saving lives and consider the quality of those lives. Many factors influence chronic conditions such as disease stage at diagnosis, age of affected person, competing family needs, access to care, and availability or lack of needed resources. Nurses who think family know chronic conditions permeate lives, far beyond biological and pathophysiological disease traits. Nursing is often defined as attending to an individual’s experience and response to health and illness (American Nurses Association, 2010). Thus, family-focused nursing care with chronic illness is attending to the family’s experience and members’ responses to chronic illness.

Chronic illnesses sometimes lead to earlier deaths and severely impacts the individual and family’s quality of life, altering their ability to perform usual activities of daily living,

294 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:37 AM Page 294

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

interrupting education, and limiting the ability to work and engage in neighborhood and community activities. Socioeconomic conditions, the place where one lives, and the ways persons interact, perform activities of daily living, solve problems, and deal with disruptions are often additional factors linked with chronic illness and its management.

Nurses who think family consider familie’s capacities to care for members with chronic conditions, regardless of whether the diagnosed person is young or old. When infants, chil- dren, or teens have a chronic disease diagnosis, the condition and medical treatments usually change over time. For example, a person diagnosed with type 1 diabetes has a vastly different medical treatment when age 35 than when first diagnosed at 11 years old. Keeping pace with changes in best medical practices is something those living with chronic conditions and their family unit’s might need to support their changing care needs.

Family nurses realize that whenever they meet persons with chronic conditions in a clinical situation, it is a chance to assess the condition, answer questions, give updated information, and address family quality-of-life concerns. Visits are times to update treatments, ascertain needed resources, and assess thinking that might differ from best care management. For example, before the late 1970s, good diabetes management occurred with what was at times impure insulin that varied with batches. Insulin needles were boiled and reused. Dietary ex- change food lists were used. Urine was regularly checked by individuals for glycosuria. Today’s treatment of diabetes involves regular blood glucose monitoring, hemoglobin A1C, disposable fine-gauge needles, and lifestyle management. Counting carbohydrates, choosing low-calorie high-nutrient foods, managing portion size, and balancing dietary intake and physical activity are stressed today. Although family health routines are important to diabetes management, family is not always present or intentionally included in the education (Denham, 2003).

Chronic Conditions in Adults

Persons diagnosed with a chronic illness as children will still have the condition as they get older. Thus, when children with type 1 diabetes become adults they are likely to experience two or more complications as they age. In adulthood, the most common chronic conditions are cardiovascular disease, risks related to hypertension and obesity, and arthritis (Chen, Baumgardner, & Rice, 2011; Halfon & Newacheck, 2010). Chronic conditions can be ac- companied by long-standing pain, severe disabilities, impaired senses, and depression or other mental health conditions. When individuals have more than one chronic condition the term multimorbidity is applied. Chronic conditions can greatly compromise life and make disease management extremely challenging. The lived experience of chronic illness af- fects person and family unit, extended kin, and friends. Thinking family linked with chronic care requires nurses to focus on disease management from a household perspective.

Conditions once only seen in pediatrics, such as congenital heart defects and cystic fibrosis (CF), are now adult diseases as these persons live longer (Halfon & Newacheck, 2010). The Adult Congenital Heart Association estimates there are 750,000 adults with the diagnosis. The Cystic Fibrosis Foundation (2010) reported that in the 1950s children rarely lived to attend grade school. Now the median predicted age of survival is 38 years. Although the exact conditions and age of onset vary, many share common clinical experiences throughout the disease trajectory and various demands are made on family members.

Chronic Conditions in Children

In general, children are likely to have chronic conditions that are genetic or environmental in nature. Childhood diseases mostly result from congenital abnormalities, neonatal exposures, or impairments due to unintentional injuries, whereas adults have chronic conditions from

CHAPTER 11 ● Family-Focused Care and Chronic Illness 295

2910_Ch11_293-324 05/01/15 11:37 AM Page 295

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

cumulative effects of lifestyle risks, environmental exposures, and degenerative conditions (Halfon & Newacheck, 2010). Major advances in health care services, technologies, and med- icines have occurred. Management of chronic conditions that were once life limiting has changed; as people with chronic illness live longer disease prevalence has grown (Cohen et al., 2011; Tennant, Pearce, Bythell, & Rankin, 2010). For example, children who, in the past, might have died in infancy now survive once-fatal conditions such as extreme premature birth, congenital heart disease, cystic fibrosis, and infectious diseases. Chronic childhood con- ditions lead to developmental vulnerability and dependence on adults for caregiving, and are manifested as different types, prevalence, and patterns of chronic disease (Halfon & Newacheck, 2010). Other common childhood conditions are obesity, allergies, asthma, learn- ing disorders, and emotional problems (Bethell et al., 2011). Children with severe chronic conditions have complex care needs with great family demands (Capen & Dedlow, 1998). Some problems that result include the following:

• Lack of availability of qualified caregivers • Lack of privacy with care providers in the home • Focus on equipment rather than the child • Needs for emergency backup • Lack of respite care • Complications when the child gets intercurrent illnesses • The need for special educational services • The absence of health coverage for expensive regimes

Compelling demands and enduring stressors place great burdens on family units. Increasingly, chronic conditions once considered adult diseases (e.g., hypertension, type 2 diabetes) now occur in children as a result of lifestyle factors.

Management of Chronic Conditions

A wide range of chronic conditions exist with varying levels of severity and health impacts. Individuals with chronic conditions are daughters and sons, sisters and brothers, parents, grandparents, and members of nuclear, blended, cohabiting, single-sex, or other nontradi- tional families.

Care Coordination

Care coordination is of utmost importance in chronic disease management. Families find that many necessary activities become extraordinary tasks that they are unprepared to han- dle. Nurses working with families when a member has a chronic condition need to assist them to learn ways to share in care management. Ill persons and family members need knowledge and support about the disease and skills to manage care. Families need to know how to care for their member, but also how to care for themselves. The vigilance needed to respond to care needs can be exhausting. Conditions change over time and so teaching and counseling must be attuned to current science and best practices.

Family Involvement in Care

Nurses often speak about patient education, and when the condition is chronic then family education is needed as well. Chronic conditions are family matters! Problems confronted affect the multimember household. Family and individual needs vary even when the diagnosis is the

296 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:37 AM Page 296

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

same. Nurses who think family are not just sensitive to the individual’s pathophysiological changes, but also to socioemotional changes in the family unit. Altered treatment plans, vari- ations in medical management, and caregiver fatigue are problems to be faced. Families need attention, too (Box 11.1).

Research evidence is available to guide individual’s medical treatment from disease- focused perspectives. Growing amounts of evidence related to the benefits of technology and medical treatments in the care and management of chronic conditions are available (Clifford & Clifton, 2012; Smith, Soubhi, Fortin, & O’Dowd, 2012; Venter, Burns, Heffors, & Ehrenberg, 2012). For example, we know much about the pathophysiology of diabetes and best practices for management with diet and medication. However, we have long known that situational factors of eating and inappropriate food offers from others challenge one’s abilities to adhere to prescribed diets (Ary, Toobert, Wilson, & Glasgow, 1986). Newer findings suggest that adherence to prescribed medicine regimens is poor (Cramer, 2004).

The importance of a whole person approach to medical care is in its infancy (Hayes, Naylor, & Egger, 2012). Managing chronic illness touches every part of daily lives and af- fects household members differently. Therefore, thinking family means giving attention to the following:

• The family responses to chronic illness (Knafl, Deatrick, & Havill, 2012) • The importance of care coordination (Maeng, Martsolf, Scanlon, & Christianson,

2012) • The relevance of time in chronic care management (Barclay-Goddard, King,

Dubouloz, & Schwartz, 2012)

Individuals and families need help that fosters resilience and maintains as much normality as possible.

Financial Costs

Annual costs of medical care of chronic illness represents 75% of U.S. total annual health care spending, or approximately $1.5 trillion (Institute of Medicine, 2012). Evidence- based interventions are needed to attend to preventable conditions using lifestyle changes, such as eating nutritious foods, increasing physical activity, and stopping tobacco use. Public health practices and policies that support promising societal approaches for change are needed. Roles of families in prevention of some chronic conditions cannot be ignored. Nurses who think family are eager to teach family units about preventable risks, wellness, and lifestyle actions that promote individual and family health. When evidence to support

CHAPTER 11 ● Family-Focused Care and Chronic Illness 297

BOX 11-1

Family Challenges W ith Chronic Conditions

For a single diagnosis such as asthma or diabetes, the family must navigate many challenges over many years:

● Multiple doctors’ visits ● Medical directions of multiple specialists ● Costs of medications, treatments, and travel to receive care ● Potential hospitalization ● Separation from peers, school or work absences ● Physical and emotional challenges of the disease

2910_Ch11_293-324 05/01/15 11:37 AM Page 297

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

current practices is lacking, then we need innovation and new conceptual models to guide care. When it comes to chronic illness, we need to be creative and rethink care delivery so information sharing, skill acquisition, and medical services are delivered in the ways needed by family units. Long-held medical model thinking and traditional patterns of care delivery have focused on episodic care, mending acute care problems, and attending to single person needs. These attitudes are not always useful approaches for meeting chronic care needs. Chronic care management needs highly coordinated, evidence-based, family-focused care that prevents complications, reduces exacerbations, and addresses family households and family unit needs.

Chronic Conditions and Family Nursing Care

The Zimanske family serves as an exemplar case for this chapter to help readers better understand the many needs of a family living with chronic illness. This chapter explains differences in family care needs when illness is chronic rather than acute. Nurses who think family provide care to those with evolving chronic conditions. This Zimanske case study provides insights into how a childhood chronic condition affects members of the family unit differently over time.

Case Study: Family Perspective of Chronic Illness

For the Zimanske family, life changed with the diagnosis of a chronic condition for its youngest member, Michael (Box 11.2). Theresa, Michael’s mother, explains, “We were married, had a suburban home, two kids, a camper in the driveway. . . . Then, one day, everything changed for us.” Michael’s diagnosis of Schimke immune-osseous dysplasia (SIOD) came after months of health challenges and tests (Box 11.3). Life for this family was referred to as life before the diagnosis and life after the diagnosis. Life before the di- agnosis included plans for Michael and his older sister to grow up, experience youthful life activities, graduate from high school, begin families of their own, and grow old with their parents. According to Theresa, life after the diagnosis meant:

• Understanding the condition • Managing disease effects on his and our physical, emotional, and social well-being • Coming to terms with the possibility that he would not live the life we had

imagined • Living with dramatic changes in the experience of family life

Theresa explained that the family manages the illness but also contends with the logistics attached to the illness: “Michael’s total health care picture was intricately connected to the well-being of our whole family, both physically, emotionally, and socially.”

Stress and Coping

Ideas of stress and coping have been studied since the 1930s as researchers were interested in ways that families contended with the loss of income and stress of unemployment during the Depression Era (Angell, 1936; Cavan & Ranck, 1938). Research identified that well- organized and cohesive families before the depression were the most capable of dealing with the stress of economic losses and family struggles. Early work on family stress factors was done by Rueben Hill (1949). Hill’s early work (refer to Chapter 7) was about the ways

298 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:37 AM Page 298

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 11 ● Family-Focused Care and Chronic Illness 299

BOX 11-2

Family Circle

Michael, son of Theresa and Don Z imanske, brother of Jessica Z imanske, was diagnosed in 1999 with SIOD at the age of 7 following a 2-year diagnostic process, which began at his kindergarten physical examination. At the age of 5, Michael was the fastest runner on his T-ball team. By age 9, he was physically confined to a wheelchair, but his resilient spirit was not. Michael traveled a medical path that constantly changed due to the progressive symptoms caused by SIOD with a life-limiting prognosis that did not define him or his family. Seeking treatment he challenged medical providers to see beyond his diagnosis and see him as a boy with family and friends in a life outside of medical trauma and disease. In 2005, after suffering severe complication due to SIOD, Michael went to his heavenly home. He left a legacy of hope, which resulted in the Be the Change campaign, completely inspired by the life of a change-maker, Michael Z imanske.

After reading this chapter, answer these three questions:

1. Identify three ways using family-focused care when caring for persons with chronic illness differs from care guided solely by the medical model perspective.

2. Describe three areas of resilience you have identified in the Z imanske family. 3. Give an example of how nurses who use family-focused care can attend to the individual with

a chronic illness in a way that positively promotes coordinated care.

Identify two similarities and two differences between Michael’s family's needs and another family where an adult has a chronic illness.

BOX 11-3

Schimk e Immune-osseous Dysplasia (SIOD)

According to Genetics Home Reference (ghr.nlm.nih.gov, GeneReviews), Schimke immune-osseous dysplasia (SIOD) is a rare, autosomal recessive condition characterized by short stature, kidney disease, and weakened immune system. This rare inherited condition, 1 in 3 million births, causes multiple hyperpigmented macules, characteristic facial features, progressive renal failure, decreased white blood cell count, recurrent infections, atherosclerosis, and reduced blood flow to the brain leading to cerebral ischemia (Boerkoel et al., 2001; Lucke et al., 2006; NIH, 2014). Those with the disease have normal intellectual and neurological development for a time. Kidney disease often leads to renal failure and end-stage renal disease. A shortage of T cells that help the body fight infection causes a person to be more susceptible to illness. Individuals with SIOD may develop atherosclerosis, cerebral ischemia and strokes, hypothyroidism, and hypoplastic pelvis. Abnormalities of hip bone development may lead to limitations in mobility and require hip replacements. Kidney transplantation may be required as a result of renal disease, and bone marrow transplantation may be indicated. SIOD is progressive, incurable, and often fatal. Few individuals with this condition survive beyond 20 years with some dying in early childhood and those with milder late-onset forms of SIOD surviving into adulthood with treatment of renal disease.

families coped with separation and reunion during wartime. His ideas have remained vir- tually unchallenged over time (Box 11.4).

Stress can lead to a family crisis when usual coping mechanisms are not effective in re- solving problems. Stress is linked with events that upset usual family life patterns and affect members’ roles, behaviors, and emotional strengths. Crises shake the family foundation and often create great levels of disorganization. When chronic disease management occurs, it calls into action abilities to organize and manage effectively. If members view the stress

2910_Ch11_293-324 05/01/15 11:37 AM Page 299

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

of situations in controllable parts, they seem more successful in managing. Families that receive a diagnosis of a chronic illness in a member may experience various types of stress and may need help in coping.

Meanings of E vents

Stress and coping often focus on ways people process meanings of events and readjust to changing situations. A number of highly valued conceptual care models can help nurses describe, explain, and predict individual and family’s response to chronic illness (Antonovsky, 1979; Lazarus, 1993; Selye, 1976). The ways situations are perceived and unique responses can influence whether an illness is viewed as stressful or a crisis. When families are overwhelmed or exhaust their resources, they are in a crisis state (Boss, 1988). Loss often occurs with chronic conditions. One form of loss, called ambiguous loss, occurs when there is no closure and people get stuck or are unable to move on with their lives (Boss, 2000). For example, how does one deal with the uncertainty of a soldier missing in action? Or not knowing whether your loved one died in the tragedy of the Twin Towers on September 11, 2001? How does an adult child cope with a parent with cognitive loss or a parent cope with an adult child with schizophrenia? Sadness, emotional suffering, am- bivalence, and misgivings are often experienced. Doubts, fears, and heartaches get resolved differently. Family nurses are attuned to life transitions caused by chronic illnesses. Nurses who think family target family strengths and areas of resilience.

Family R esilience

The ability to withstand and rebound from adversity is called resilience; it is a positive way to manage stress. Family resilience focuses on the ability to “rally in times of crisis, to buffer stress, reduce the risk of dysfunction, and support optimal adaptation” (Walsh, 2012, p. 175). Resilience views families not as dysfunctional or damaged but as capable and able to skillfully survive stressors. Resilience and family strengths are important to in- dividuals, family units, and the communities where they live (Box 11.5).

When nurses take a resilience perspective, they focus on family members as part of a re- sourceful whole. This is particularly important for families with chronic conditions. It helps when nurses recognize the family as capable of thriving despite the challenges, while still acknowledging the difficulties faced on a day-to-day basis. Resilience enables families to respond favorably even in the most troubling or difficult situations and suggests areas for

300 CHAPTER 11 ● Family-Focused Care and Chronic Illness

BOX 11-4

Assumptions Link ed W ith Stress

Reuben Hill’s (1949) original stress model made several assumptions:

● Unplanned and unexpected events can be more stressful than those anticipated. ● Stressors focused on one family member versus the whole family have different forms of

related stress. ● Severity of stress makes a difference. ● Stressors that occur within the family (e.g., serious illness) are more stressful than events that

occur outside the family (e.g., war, economic recession). ● Perceptions of stress are increased when no prior experience in handling a situation exists and

reduced if the family believes they can handle the situation. ● Stressors that are ambiguous are more challenging than ones that are more predictable or less

ambiguous.

2910_Ch11_293-324 05/01/15 11:37 AM Page 300

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

assessment and nursing actions (Simon, Murphy, & Smith, 2005). Resilience is not static— it is a dynamic quality sensitive to the changes across time at the individual and family level (McCubbin & McCubbin, 1989). As families face long periods of stress, strain, or transition, a pileup effect can cause difficulty in adapting. Families can use strengths, har- diness, and abilities to adapt but they need adequate resources and supports. Nurses can assist the family to resolve problems, make wise decisions, and manage crisis situations.

Focus on Strength s

The traditional deficit or problem-focused care models rely on symptom management and attempts to fix what is wrong. Stress assessment must include the individual and family members, and identify specific factors that are troubling or are strengths to build upon. Resilience suggests that focus on family strengths provides a useful way to direct nursing actions. Multiple factors influence responses to individual needs and family members can pool their strengths to them. Some families might need referrals for additional support. As nurses think family they help them identify problems and gain skills to cope effectively. If pain is a problem, nurses can help family units identify ways, besides medications, to man- age symptoms. A critical appraisal of the use of family resilience in chronic pain manage- ment found that focusing on strengths offers helpful strategies (West, Usher, & Foster, 2011). The individual-nurse-family partnership can be used to identify needs, set goals, plan care, and evaluate outcomes.

Family Models

Many theories and conceptual models help nurses understand chronic conditions and func- tional needs. Several relevant care models have been introduced (Chapters 7 and 8). The Family Management Style Framework (FMSF) (Knafl & Deatrick, 2003; Knafl et al., 2012) is especially useful for thinking about care management of a child with a chronic condition. This model has been applied to family management of lethal congenital childhood condi- tions (Rempel, Blythe, Rogers, & Ravindran, 2012), families caring for older adults with dementia (Beeber & Zimmerman, 2012), and sudden death of a family member (Wiegand, 2012). Family management style is the way family members define the situation, manage conditions, and view consequences (Knafl & Deatrick, 2003). Definition of the situation includes beliefs about cause, seriousness, and predictability of the illness. Views of the ease or difficulty in managing a condition and normality are considered. Management behaviors include values and priorities related to illness management and the extent a family has de- veloped routines and strategies to manage. Perceived consequences are views about the balance between illness management, other life aspects, and future implications (Knafl et al., 2012). Nurses can use the FMSF to realistically identify strengths and needs in chronic disease management.

CHAPTER 11 ● Family-Focused Care and Chronic Illness 301

BOX 11-5

Traits of Resilient Families

● Ability to adapt to stressful situations ● Actions that demonstrate care for one another ● Capacity to communicate openly and honestly with one another and manage conflicts ● Flexibility in assuming needed roles and responsibilities ● Connections to larger social and community groups that are enriching

2910_Ch11_293-324 05/01/15 11:37 AM Page 301

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

The Family Health Model (FHM) discussed in earlier chapters uses an ecological view to identify interdependent factors linked with chronic illness. The model’s three domains, contextual, functional, and structural, can be used to assess, plan coordinated care with multiple family members, identify appropriate nursing actions, and evaluate individual and family outcomes in different realms of family life (Denham, 2003). As you read about the Zimanskes’ experience, consider ways the FHM can guide family thinking. For example, the family context enables the nurse to learn about the family household, financial con- cerns, needed member resources, transportation to medical visits, and community re- sources. Assessment of the functional domain helps the nurse learn about member roles, communication styles, family strengths, and ways the chronic condition influences member interactions. The structural aspect can help the nurse identify which usual family routines might be disrupted and plan new ones for managing the chronic illness. The FHM can guide nurses as they assist families in managing stress, developing resilience factors, and optimizing their family management style (Box 11.6). Nurses can use the FHM to collab- orate with family units to manage care needs.

Diagnosis

For the Zimanske family, the diagnosis of SIOD affected every aspect of family life. Michael was small at birth, born 6 weeks prematurely, but otherwise considered healthy and nor- mal. His size, sensitivity to light, and poor feeding were initially viewed as factors linked with early birth. His parents, Theresa and Don, and sister Jessica welcomed him with hope for a “normal” family experience in Minnesota’s suburbs.

Michael was a healthy toddler, visited his primary care provider regularly for well-child checks, and had few minor illnesses. At his kindergarten checkup, the pediatrician noticed Michael had not grown since the last visit and ordered bone radiographs. Later that week, Michael visited his dentist and had x-ray films of his teeth, part of a normal dental evaluation. Noting abnormal development of Michael’s teeth and jawbones, the dentist referred the family

302 CHAPTER 11 ● Family-Focused Care and Chronic Illness

BOX 11-6

Evidence-Based Practice and Chronic Conditions

Family-focused nurses realize that ideas about chronic care are based upon evidence. Consider these two examples:

1. What are the relationships between having a child with a chronic condition and family functioning?

Based on a secondary data analysis from six independent studies, families of children with and without chronic conditions do not differ significantly from one another in the usual ways families manage daily activities. However, risk factors identified that seem to result in greater family difficulties when coping with chronic illness include older child age at diagnosis, fewer children in the home, and lower household income (Herzer et al., 2010).

2. Does family-centered care improve outcomes for children with chronic conditions and families?

A systematic review of evidence related to families of children with chronic conditions found positive associations between family care and improved efficiency in service use, health status, satisfaction, access to care, communication, systems of care, ways families function, and family outcomes (Kuhlthau et al., 2011).

2910_Ch11_293-324 05/01/15 11:37 AM Page 302

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

to the University of Minnesota Medical Center for further evaluation. A genetics consult led to additional tests and the discovery of proteinuria, suggesting abnormal kidney function. The geneticist found Michael’s abnormal findings in several body systems that seemed unrelated. Standard genetic testing failed to identify any genetic conditions. The geneticist found Michael’s abnormal findings in several body systems that seemed unrelated (Fig. 11.1).

THERESA: “From the age of 5 to 7, we were chasing separate issues that were like pieces of a puzzle that didn’t fit. There were so many specialists, so many issues, and no one could figure out how they were connected. The challenge for us as a family was that each specialist was only seeing part of the picture. The nephrologist told us that Michael’s kidney function was declining and he would probably eventually need a kidney transplant. The orthopedist focused on Michael’s worsening hip pain and sent us all over the cities to see different bone specialists. Michael’s geneticist said there must be some reason that all of this was happening to Michael and she was determined to find an answer.”

As the geneticist traveled around the country to professional conferences, she made a point to ask physicians if they had seen a case like Michael’s. Finally, at a conference in Texas, she met a research team who knew of a child with similar issues in Canada. This patient had been diagnosed with SIOD. After additional testing, Michael was finally diagnosed with SIOD at 7 years. Imagine the stress this family faced in 2 years of searching for a diagnosis. The diagnosis explained the medical issues, but the illness journey had just begun. Once Michael was diagnosed, his older sister and parents faced dramatic life changes (see Box 11.3).

Chronic Conditions and Ecological Perspectives

The Family Health Model (FHM) can help the nurse understand multiple interactive factors relevant to the Zimanske family’s health concerns (Denham, 2003).This ecological per- spective reminds us that family members have relationships within and outside the house- hold and these interactions influence family health over time (Bronfenbrenner, 2005). This perspective allows nurses to identify interdependent family health factors linked with

CHAPTER 11 ● Family-Focused Care and Chronic Illness 303

FIGURE 11-1 Michael: A child and family live with a chronic condition.

2910_Ch11_293-324 05/01/15 11:37 AM Page 303

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

chronic conditions (Denham, 2003). The Zimanske family faced many frustrations in deal- ing with unconnected health care providers who never spoke to each other as they sought a diagnosis. Each was capable in their area of expertise, but they didn’t connect the various symptoms. Family frustration and anxiety were high as they dealt with uncertainties from a growing pile of questions.

O ther Factors Affecting Families With Chronically Ill Members

Most care for individuals with chronic conditions occurs in the home and community. When a medical model of care is used, illness care management focuses on prescribed med- ical regimens and adherence. From an ecological perspective, care management refers to daily life experiences. Family-focused care requires the nurse to consider ways care man- agement fits or does not fit into the family life and what negotiations are necessary (Baile, Tacchi, & Aaron, 2012; Sperry, 2011). Although families spend time with health profes- sionals, more time is spent in their household interacting with social networks within their community. Problems and decisions are often handled alone. Family nurses consider ways time is regularly organized and how activities, resources, responsibilities, and roles are used to manage the disease. Family members have many conflicting responsibilities and may lack needed resources or supports. Some families can experience a pileup of troubling fac- tors over time. For example, diabetes management requires altered meal schedules, food choices, physical activities, and medical care, and affects social aspects. If family members don’t understand or refuse to support the member with a chronic disease, then this person may have more difficulty making the needed lifestyle changes.

Sociop olitical Factors

Social and political factors have influenced the ways families manage chronic conditions. Several poignant examples of issues that affect families raising children with chronic health conditions are available (Ray, 2003). For example, resources for management of certain conditions are often allocated based on eligibility criteria. Treatment for a mental health concern may require the family to paint an extremely dire picture that exaggerates, em- phasizes, or embellishes facts about behaviors. Often individuals cannot receive emergency mental health care unless the person is suicidal or threatening others.

Federal or state policies that budget for community-based services may affect care access for some persons with chronic conditions. Choices far removed from families’ lives can sig- nificantly influence the availability of supports. Availability of health insurance or cash or access to health care professionals or specialists affects the care individuals receive. Often seemingly unrelated systems and processes affect families’ abilities to care for their members.

Societal norms that recognize maternal caregivers may overlook roles of fathers or other caregivers of children with chronic conditions; they may be less visible and receive less sup- port (Ray, 2003). In the United States, although the Family and Medical Leave Act (FMLA) of 1993 requires large employers to provide employees job protection and unpaid leave for medical reasons, this is unevenly applied by states’ parental leave policies. Employer’s discretion could mean ineligibility for medical leave without losing your job. Laws have been unevenly applied for GLBT (gay, lesbian, bisexual, transsexual) persons, civil partners, foster or adoptive parents, and grandparents who provide care for those that are ill. Social and political contexts—from an ecological perspective—can influence ways families provide chronic care in different ways.

School attendance takes up a large part of children’s days, a time when they are sepa- rated from the family household and subject to potentially different societal, physiological, and psychological pressures. School attendance can be affected in direct proportion to the

304 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:37 AM Page 304

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

severity and visibility of a chronic condition. The following are some of the factors influ- encing school experiences:

• Openness of teachers to learn about a child’s needs • Comfort of the school system to manage the child’s condition • Intensity of medication or treatment needs during the school day • Child’s abilities to participate with others • Child’s self-care needs (e.g., hygiene, meals, mobility, disruptive behaviors) • Perceptions and tolerance for differences by teachers, school administration, and class-

mates • Availability of health care assistance

Adults might experience similar concerns as they try to remain employed. Children and adults with medically complex conditions often require frequent medical visits to multiple providers. Absenteeism can mean falling behind in learning for children and job loss for an adult. This expensive care can be a financial burden to families. Care needs can hinder school attendance or cost lost work time.

Importance of School for Children With Chronic Conditions

Michael’s ability to attend school and be with friends was important to his quality of life. Staying in school, as his condition progressed, was a growing challenge. As more severe neu- rological problems developed, he became less able-bodied. SIOD affects the vascular system and persons with this condition often develop arteriosclerosis and cerebral ischemia due to decreased blood flow to the brain. For Michael, this meant transient ischemic attacks (TIAs).

THERESA: “One day the school nurse called and told us that when Michael was writing, the pencil kept dropping out of his hand, and he was slurring his speech. We took him to the emergency department and found out he was having TIAs. This meant seeing a whole new set of specialists. He was put on new medication to prevent blood clots. The TIAs were minor and he quickly returned to normal after the attacks, but the TIAs were progressive. This is when everyone got scared to have him around. I thought, ‘Should he be playing? Should he be going to school?’ But we knew that for Michael’s best quality of life, he needed to go to school and be with friends. I made a deal with the school. I quit my current job and found one closer to the school so I would never be more than 5 minutes away. If anything happened they could call me and I would be there. I was his transportation. He had to go to school.”

Stigma Associated With Chronic Illnesses

Nurses who think family acknowledge the reality of social norms and stereotypes. Stigma is a predominant social attitude toward people who are different, including those with chronic conditions (Seligman & Darling, 2007). Some chronic conditions are more visible than others. For example, persons with mental illness experience stigma comparable to persons with AIDS or ex-convicts (Baldwin, Schultz, Rogers, & Rogers, 2011). Mental ill- ness or cognitive disabilities make a person “stand out” due to unusual behaviors or speech. For example, persons with schizophrenia or psychosis may hear and respond to voices un- seen by others. Those with cognitive disabilities may act younger than actual ages. Even some health professionals often hold more negative attitudes toward persons with disabil- ities (Seligman & Darling, 2007).

Stigma is a product of social norms and stereotypes. It affects families of individuals with chronic conditions by what has been described as “courtesy stigma” (Goffman, 1963).

CHAPTER 11 ● Family-Focused Care and Chronic Illness 305

2910_Ch11_293-324 05/01/15 11:37 AM Page 305

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

This refers to avoidance, rejection, or ridicule that extends to others associated with a per- son who is viewed differently. Parents and siblings of children with disabilities may be viewed as troubled or burdened, or brave and courageous, by persons who have not met the family (Seligman & Darling, 2007). Thinking family implies being considerate of dis- parate appearances or actions and seeking understanding about the troubling aspects that encircle families when a member has chronic illness. It is important that nurses understand that families vary widely and things like cultural and the nation where one resides influ- ences the ways nursing care is delivered (Box 11.7).

Facing Stigma in Daily Life

When he was in elementary school, Michael’s skeletal issues with his hips became a focus around which he would plan his daily activities. THERESA: “Because of hip pain, he knew he could only walk a certain amount each day, so he would plan his day in the mornings before he got out of bed. He would slide around on the floor at home to save his ability to walk for school and other activities. Eventually he got a scooter. Then the Big Day came in fourth grade when he had to go to school in a wheelchair. He wanted his friends to treat him the same but it actually turned out to not be a big deal. One day I watched from a dis- tance as Michael and his friends made their way down the school hallway. They were trip- ping all over him, laying on his chair and playing. I thought, ‘I need to talk with the teachers and ask the kids to be careful around him.’ One day I went to a playground and watched him. I could see his school friends saw Michael and not the wheelchair. This was a good thing. It was a learning process for all of us.”

Family Functioning With a Chronically Ill Member

Using an ecological point of view helps us understand that when a member has a chronic condition family units must make adaptations to medical and lifestyle needs. Chronic conditions often alter relationships and roles. A mother with a chronic condition may not parent in ways others imagine. Family roles and responsibilities may be altered when a

306 CHAPTER 11 ● Family-Focused Care and Chronic Illness

BOX 11-7

Family Tree

Darunee Jongudomk arn, RN, PhD (Thailand)

Dr. Jongudomkarn is an Associate Professor in the Faculty of Nursing at Khon Kaen University in Thailand, and served as the director of the master’s degree program in Family Nursing (2003–2010). In 2003, she led a study about the competency needs of family nursing and developed a curriculum to guide all master’s level family nursing programs in Thailand. Her efforts successfully preserved the education and advanced practices of family nursing in Thailand. Her scholarly work with families focuses on pain management, quality of life, gender, and women’s health. She has published an integrative review of family nursing interventions in Thailand as well as several other family nursing articles in the Thai language. She and her colleagues have developed the Khon Kaen University Pediatric Pain Assessment Tool, the Khon Kaen University Family Q uality of Life Scale, and the Khon Kaen University Family Health Nursing Model. In 2003, Dr. Jongudomkarn established the Family Nursing Society of Thailand, one of only two national family nursing organizations in the world: http://www.thaifamilynurse .org/index.php/en/. This organization has over 300 members. In 2007, she was awarded an Innovative Contribution to Family Nursing Award from the J ournal of Family Nursing at the Eighth International Family Nursing Conference to honor her foundational leadership in family nursing in Thailand.

2910_Ch11_293-324 05/01/15 11:38 AM Page 306

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

member has a chronic condition. Family nurses recognize that the person with chronic needs can influence family stress. Nurses who think family assess family processes, member interactions, and individual roles when planning nursing actions and working with individuals to set goals for care outcomes.

Theresa described a provider interaction: “As we were leaving the room, right after re- ceiving the diagnosis, our doctor turned to us and said, ‘I feel it’s necessary to tell you that most marriages involved in chronic illness situations like this end in divorce.’ I thought, what else? My husband and I didn’t talk all the way home. We were overwhelmed with informa- tion.” A misperception by some providers and families is that a member with a chronic con- dition is harmful to marriages and families (Eddy & Walker, 1999). In the 1980s, research about children with disabilities was guided by assumptions that a child with a chronic con- dition was tragic and detrimental to family health and marriage (Risdal & Singer, 2004). Some care providers still believe they assist families by preparing them for negative outcomes. However, current research underscores the idea that family responses to chronic conditions range widely with positive adaptations and strengthened families (Risdal & Singer, 2004). Nurses who focus on family strengths can be most helpful to families.

Providing Useful Nursing Actions

Stress can be associated with chronic conditions. Nurses who think family realize that the most effective way to support a family unit is by identifying strengths. These are used to identify strategies for adapting in the unique ways needed to manage chronic conditions. Theresa recommends using a positive approach to family members. For example, a nurse could say, “Through our discussions, I see you are a loving, supportive couple. I believe you will endure the challenges of this diagnosis.” This recognizes the positive relationship strengths, commends the family, and lends hope for an uncertain future.

The family not only faces uncertainties with an initial chronic diagnosis, but must also deal with changes as the chronic condition shapes the developing person, family unit, and daily family life. Children with chronic conditions may not progress through typical stages and may fail to meet developmental milestones at the same pace as peers (Larkin, Jahoda, McMahon, & Pert, 2012). Chronic conditions can influence child development and phys- ical or cognitive limitations (Friedman, Holmbeck, DeLucia, Jandasek, & Zebracki, 2009). Adults living with chronic conditions can experience similar concerns and need family sup- ports. Future uncertainty can weigh heavily on a family's future. Healthy children aspire to leave the family home as they enter adulthood; children with chronic conditions may have different timelines. Leaving home and independence, particularly if the condition has cognitive or physical limitation issues, may be impossible for some children with chronic conditions and create great disabilities for older persons as well. The uncertainty of a chronic condition may interfere with things like activities of daily living, education and employment, caregiving tasks, and family vacations

Living With O ptional Plans

THERESA: “With every planned event, we always had a plan B because of Michael’s chang- ing and progressive condition. His sister often took the brunt of this constantly altered ac- tivity. Our daughter grew accustomed to taking ‘the back seat’ in family decisions. Choosing where to sit at a Twins baseball game, we could not consider preferred seating because we had to sit in the wheelchair section. Family outings and vacation choices were made based on wheelchair accessibility. Even decisions about daily chores needed to be altered. Our daughter understood but at times she struggled with the fairness of the choices.”

CHAPTER 11 ● Family-Focused Care and Chronic Illness 307

2910_Ch11_293-324 05/01/15 11:38 AM Page 307

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Life span developmental theory considers the timing of normal or usual developmental stages and identifies if the event occurrence is on-time or off-time (Mortimer, 2012). Tran- sitions that do not occur at an expected time are considered off-time and might require special focus. Family development theory refers to transitions through normative events versus non-normative ones that might occur due to chronic conditions (Gavazzi, 2011). Chronic conditions can delay or alter family milestones. Launching is the time when fam- ilies help young adults transition to independence; they marry, attend college, or acquire one’s own apartment. If events can never occur or are off-time, they are viewed as non- normative. Family nurses can teach family members ways to plan for on-time and off-time transitions and milestones.

THERESA: “At age 5, Michael was the fastest runner on his T-ball team and by age 9 he was confined to a wheelchair. With chronic illness some things seem to stand still, frozen in time while other things are fast forwarded. The patient and family deal with both at the same time; wishing for what was and coping with what is. It was a delicate balance between allowing Michael to be age appropriate and attend events like school dances and a Friday night movie with friends, as we considered the “what-ifs” of his multilayered, life-limiting disease.”

In families in which a child has a chronic condition, launching into adulthood can be delayed or complicated. In families in which an adult has a chronic condition, normative events such as retirement, grandparenting, or experiencing an “empty nest” might happen off-time or not at all. Daily life can be filled with unexpected things as activities are inter- rupted; frustration and conflict must be faced. Nurses who think family help them evaluate resource needs and support them through transitions, whether on-time or off-time.

Obstructed Routines of Families With Chronically Ill Members

An ecological perspective is useful in thinking about daily life in family households and ways systems can be supportive or threatening. The Family Health Model explains ways family health routines and rituals are important in daily life (Denham, 2003). A chronic condition often requires adaptation or modification of old routines and structuring of new ones. Some routines change dramatically and new ones must be created. Routines are habits or daily practices done regularly without conscious thought and it is hard to change things we do not think about. Routines are like our skin, we may not notice them until they are disrupted—they are part of usual life. They might be protective or give a sense of security or normality. Some chronic conditions call for radical changes that can seem as painful as removing skin. A family meal of fried chicken, mashed potatoes, gravy, and homemade biscuits for Sunday dinner may be the family tradition, a family health routine. This is more than a meal, it is part of family identity—what we do as a family. If dietary modifi- cations are needed, then this routine and others might need to be altered. Routines can be underlying causes for chronic conditions, part of self-management, and very difficult to alter.

What family routine changes might be needed if an adult is diagnosed with type 2 dia- betes? Is this different from a family with a child diagnosed with type 1 diabetes? What happens if a member must be fed through a gastrostomy tube or needs daily hemodialysis? What kinds of changes are called for in these families? Family-focused care uses intentional actions to assess, set goals, and plan daily routines. Routines have many threads, being woven from our culture, values, beliefs, attitudes, and motivation. Deconstruction of old routines and establishment of new ones must be planned in far greater detail than went

308 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 308

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

into creating the original routine. Altering routines is a family matter that requires coordi- nation and willingness to change. Family members usually want to help, but may not know the best things to do. In some families, members can be highly resistant, create temptations to ignore desired care needs, and even be subversive (Denham, Manoogian, & Schuster, 2007; Manoogian, Harter, & Denham, 2010). Some family members do not view the needed changes as their problem. Nurses who think family recognize these challenges and collaborate to identify the best ways to meet needs.

Reconstructing Family Health Routines

Nurses who think family focus on family health routines as they partner with families to set goals, plan actions, and reconstruct new life aspects to effectively address medical needs linked with chronic conditions. Individual-nurse-family collaboration can foster conversa- tions around routines tied to dietary requirements or restrictions. Favoring a positive stance can help family units create action plans with measurable goals to achieve. For example, dietary changes are challenging and have deeply associated linkages with family lives. Food consumption revolves around beliefs and associated values and eating with others occurs regularly. It is a social activity and changes need to consider social aspects. Family meals are not easily altered. In order to make effective changes, families need information, skills, motivation, goals, and plans for action.

THERESA: “Social activities dramatically changed. Birthday party invites for Michael and sleepover events got complicated and eventually stopped. My friendships got limited because there wasn’t free time. My husband worked overtime whenever possible to support us. This was especially important when I started working part-time to be home with Michael and took multiple leaves of absence without pay as his illness progressed. The dis- ease meant Jessica had to handle things at home—phone calls, housekeeping chores, and others in my constant absence. Mother-daughter time with Jessica was altered because I was so often away with Michael. On Jessica’s 16th birthday, I was at the hospital with Michael. My husband and I were consistently apart because of medical appointments. One year the flowers my husband bought for our wedding anniversary were delivered to the hospital because I was there with Michael.

The Zimanske family tried to maintain family routines that enabled them to manage Michael’s condition and retain as much normality as possible. Michael played T-ball and golf with adaptations as his physical condition changed. He had to give up dreams to play football but learned to love wheelchair basketball. When he was in the hospital, Michael’s sister attended social activities and church functions (Fig. 11.2). She had supportive rela- tionships beyond the family.” While adaptations were made, things were seldom easy.

Family Member Care for Self

THERESA: “Consistently I was told by medical providers that I needed to take care of myself. How could I do that? When Michael was in the hospital, most days the first op- portunity for a meal was at night with only vending machines available. Often the only sleeping option was a plastic, not-so-easy-to-recline chair next to Michael’s bed. My blanket was often a sheet from Michael’s bed because I couldn’t find anything else.”

Nurses can anticipate some needs of the family, especially for those spending the night with a child, and help provide a healing environment each day. In the clinic, ask family members how many appointments they have that day. Be concerned about how much time they spend in the clinic. Stress affects family members' abilities to comprehend information and cope. Chronic fatigue can be masked but it adds barriers.

CHAPTER 11 ● Family-Focused Care and Chronic Illness 309

2910_Ch11_293-324 05/01/15 11:38 AM Page 309

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

The nurse who thinks family recognizes ways care environments limit family’s abilities to continue family health routines. This requires more than passing suggestions; it requires intentional dialogue to ascertain needs. Caring for a chronically ill member puts others at risk for sleep deprivation, poor nutritional intake, fatigue, and general neglect of their physical, emotional, and social needs. Nurses who think family genuinely respect family’s comfort needs and know some situations can be overwhelming. They know it is not always easy to ask for help. Care environments can look like well-oiled machines with clinicians continually attending to tasks. This might be mysterious and confusing as families seeking services erroneously interpret actions. Nurses can explain, show care and kindness, and communicate.

Family Stress and Uncertainty With Chronic Conditions

Family response to chronic conditions depends upon unique family unit factors (e.g., age of onset, course, outcome, degree of incapacitation, complications, supports). Chronic condi- tions can have acute onset, such as in congenital conditions or traumatic brain injury, or a gradual onset such as muscular dystrophy (Rolland & Walsh, 2006). The course of a chronic condition may be progressive, constant, continuous, relapsing, or episodic. Outcomes may result in comorbid conditions, a shortened life span, or death, or may not affect the life span at all. Disabilities can occur in cognition, movement, sensation, and social interactions. While many have few daily limitations from a chronic condition, others may have some form of stress and others have incapacitation of some degree. Coping and planning are affected by ambiguity about the future and the time that will elapse before things change (Rolland & Walsh, 2006). Family care addresses the diverse ways a specific condition manifests over time and the expressed needs of a particular family (Fig. 11.3). In the Zimanske family, Michael’s illness had a gradual onset, and symptoms emerged over time as his condition worsened.

Living With a New Normal

THERESA: “Normal was like a roller-coaster during Michael’s diagnostic process with many ups and downs. Normal abruptly stopped when the rare disease was named. There is nothing normal about a health care experience. Michael deserved and needed normal in

310 CHAPTER 11 ● Family-Focused Care and Chronic Illness

FIGURE 11-2 Michael and his sister Jessica.

2910_Ch11_293-324 05/01/15 11:38 AM Page 310

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

the midst of abnormal. One of my roles was to provide him and my family with some nor- mal. This meant medical providers had to help because we were most often in their envi- ronment and not ours. Patient-centered care coordination was vital to keeping some normality in our life. Sometimes medical providers pretended our life was normal and gave little thought about our needs. This often upset schedules. At times Michael was uncoop- erative because he felt unheard and not valued. Having blood draws three times a week isn’t normal. Going to dialysis 4 days out of 7 is not normal. Michael needed medical providers to acknowledge and say to him, this is not normal. This is a big deal. I needed relationships I could trust and depend on to redefine normal.”

Given the rare occurrence of Michael’s condition, the family did not know what to expect. How long would he live? How would his changing conditions affect us? Michael’s condition was progressively incapacitating and fatal. It was important for nurses to consider what un- certainty means to the family. Nurses who think family know they cannot always provide an answer or a solution, but honesty, trust, and availability to listen are important.

Living With a Fatal Diagnosis

THERESA: “Consider what the word fatal means to a family. Ask what questions we have. Uncertainty is lessened with honest conversation. Admitting uncertainties and limitations develops strong relationships between providers and family. Trust is needed. Sometimes medical providers made assumptions and judgments about us. We sometimes found out through frustrating conversations that some knew nothing about Michael’s rare disease. Some admitted their limitations. For example, they might say, ‘I never heard of this diag- nosis’ or ‘I don’t have any experience with this disease.’ But if they made a promise to get educated, this suggested that they wanted to be our partner. Trusting your caregiver allows patients and families the freedom to admit their limitations and creates a relationship that contains no judgments or assumptions. It establishes an honest climate of ‘I will give my best, but I’m not perfect’ between persons in the health care relationship. Honesty becomes the one thing each can be certain of.”

Nurses who think family avoid stereotypes and assumptions about family situations. These nurses are authentic, face situations, do not placate people with thoughtless actions,

CHAPTER 11 ● Family-Focused Care and Chronic Illness 311

FIGURE 11-3 Michael's family.

2910_Ch11_293-324 05/01/15 11:38 AM Page 311

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

and welcome questions even when they lack answers. Nurses who think family reflect on what it must be like living in the other’s shoes. They listen and help find needed informa- tion. Nurses who think family respect the experience of those receiving care and realize they have expert knowledge about the person receiving care. One’s national origin has great influence on the ways family care is understood and important for nurses to recognize when caring for individuals that have immigrated from other places (Box 11.8).

Uncertainty

THERESA: “On Halloween, Michael developed an infection. We knew that if he had any fevers we had to catch it right away or the problem would become serious. That night we went to the emergency department, he was really sick. He had an infection and his kidneys were shutting down. He went to get an MRI (magnetic resonance imaging) scan and afterward he had a big stroke. He thought his name was Robert. They started talking about dialysis. They were trying to adjust his medications, but no one really knew what to do. SIOD is such a rare disease that there was no treatment guidance. It was a guessing game. They said they could ‘try this’ or ‘try that,’ but there were no guarantees. We were asked to make decisions about his treatment. There was so much uncertainty. It was horrible. That’s when I learned I had to trust my gut. We were going on faith now and we had to trust in God.”

“Michael’s condition became increasingly unstable. He received dialysis and was in the hospital much of the time with unstable blood pressure, increasing numbers of strokes, and complications with fluid status. He attended school a few hours a day when he was not in the hospital. The school adjusted his individualized education plan (IEP) to lower expectations for his academic achievement. This is when things started to shift personally for us as a family. Now, the question was ‘Will he survive?’ We had to rethink how we were going to treat him medically, emotionally, and physically.”

Although Michael’s case is about a rare illness, similar things also happen with other more common chronic conditions. Uncertainty is characteristically a part of the experience. Letting families voice concerns, listening to what is said, and managing awkward silences are part of family care.

312 CHAPTER 11 ● Family-Focused Care and Chronic Illness

BOX 11-8

Family Tree

Margareth Angelo, RN, PhD (Braz il)

Dr. Margareth Angelo is a Professor and Director of the Department of Maternal-Child and Psychiatric Nursing at the University of Sã o Paulo, Brazil. For over 20 years she has taught family nursing intervention and research methods to undergraduate and graduate students. She is the founder and coordinator of the Group of Studies on Family Nursing. This group brings together teaching, research, and clinical activities related to the family phenomena such as the health-illness situation, family nursing interventions, family nursing education, and qualitative research methods. Dr. Angelo has authored several book chapters and numerous articles published in national and international nursing journals. She has received awards and international recognition for her work in family nursing development in Brazil. Her academic work includes international exchange activities and research collaboration, developed as a visiting professor at universities in Latin America and Europe, and mentorship of graduate students from Portuguese- and Spanish-speaking countries. In 2010, she worked with others at the School of Nursing to host a First International Symposium on Family Nursing in Sã o Paulo, Brazil. In 2012, she was elected to the Board of Directors for the International Family Nursing Association.

2910_Ch11_293-324 05/01/15 11:38 AM Page 312

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Hearing the Story

Families with members who have a chronic condition need nurses who understand the family’s story. Families gain expertise over years of caring for members with chronic con- ditions. Some stories are not favorable. They tell of misunderstandings, confusion, lack of knowledge, failure, or other difficulties managing conditions. The best way to learn about living with a condition is to ask families to share their story. These actions are important and certainly aligned with providing competent nursing care, but they are not all that peo- ple seeking care expect. Hearing family stories provides a way to learn about an experience from the perspective of those who have lived with it. This point of view seeks to capture the larger perspective of many relevant things. Nurses who think family make time to hear the unique family experiences and are available to hear stories.

Forming Relationships

Nurses who think family ask questions: “What was it like for you when you learned about this diagnosis?” “How has your family managed to maintain normalcy?” Family nurses can listen to the telling of unique family stories that give clues about disease management and family needs. This takes time, but it helps build trust, encourages mutual understanding, and offers empathy. Building trust may not involve words. Consider Theresa’s description:

THERESA: “What began as a watch-dog time period to ensure my son got a couple hours of uninterrupted sleep in the hospital turned into a life-altering situation. We were often in the hospital more than at home, and sleep became a treasured commodity. Michael’s best sleep was from 5 a.m. to 7 a.m. However, he was often awakened for things that could easily be done later. So I started to place my chair outside the door of his hospital room during that time and monitored who and why they wanted to enter. I realized this was the only quiet time I got in a 24-hour period. So I used the time to read, pray, collect my thoughts, and prepare for the day ahead. Hospital nurses and staff would walk by; some said good morning and others just glanced at me. I’m sure many wondered what that woman in the hallway was doing. One morning a nurse who walked by me every morning brought her office chair and placed it next to mine in the hallway. She demonstrated that she saw me and my needs. She viewed a person, a woman burdened and in need of some- thing more than the typical morning chit-chat. In the relationship we developed, she became a trusted friend and offered a few minutes of normal. Inside every disease are real people who need the medical community to assist them to remain in the world outside the hospital and clinic walls.”

Asking the family to tell their story helps the nurse align care processes with family’s perceived needs. Although nurses may define health as the absence of disease, a family of persons with chronic conditions may define health based on expectations. For example, Michael’s confirmed diagnosis meant he would lose functions over time and a new family life trajectory needed to develop. Anticipatory guidance for a healthy 10-year-old includes increased independence over time. Anticipatory guidance for Michael’s family likely varied from the norm as he grew older and experienced decreasing levels of independence.

THERESA: “Although we wanted to believe Michael’s outcome would be different from the prognosis given, we had to quietly prepare for life without him. There is little way to prepare for such a tremendous loss. It means what some nurses would define as denial be- comes a critical part of our coping. Some days we had to pretend our life was normal. Only in a relationship with us would you know we still talked with him about college, his hope to drive a big caterpillar on road construction, and his desire to marry. Our definition of Michael’s health, physical and emotional, had a life-limiting scope, but we viewed each

CHAPTER 11 ● Family-Focused Care and Chronic Illness 313

2910_Ch11_293-324 05/01/15 11:38 AM Page 313

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

day through a lens of hope and possibility. Our realignment was painful, exhausting, and often confusing. It was important to discuss our spiritual beliefs with medical providers during ongoing and escalating needs.”

Changing Perceptions

Time plays important roles in ways quality of life is understood. Research highlights the notion of response shift to chronic conditions as a reconceptualization in the meaning of an illness experience (Barclay-Goddard et al., 2012). This means that perception of well- being or life quality is different from others. For example, a man with a spinal cord injury may initially consider life quality low because he can’t walk or function as he did before the injury. Over time, this situation may be reframed. A “good life” might be viewed as abilities to participate in family or social activities, times when one is pain free, or finding new life meanings through compassion and spirituality (Barclay-Goddard et al., 2012).

THERESA: “This disease abruptly invaded Michael’s life. The rest of our life continued. The world events still continued around us. School activities continued. Our daughter’s softball practices, her games—those continued. To me, his mother, it seemed as though one day I was buying him cleats for T-ball team and a few days later he was to be fitted for a wheelchair.”

Being a healthy family before illness meant work, raising healthy children, and finding time for fun. After diagnosis, this family re-formed ideas of a healthy family to include Michael’s changing condition. They learned to live with vulnerabilities and uncertainty in new ways. They found new meanings, celebrated successes, and rethought normal. Through many adaptations the family demonstrated they were a resilient family enduring the unmanageable and impossible.

Preparing For and Acknow ledging Changes O ver Time

Michael’s renal status worsened and he needed a kidney transplant. Family members were evaluated as a suitable match for a kidney donor. Theresa was ruled out due to high blood pressure. His father discovered he had a mitral valve problem requiring heart surgery. His aunt was identified as a match and the planning for transplant began. Dates for the trans- plant were canceled due to Michael’s medical status, infections, and cardiac instability.

THERESA: “Finally, a date was set for the transplant. It was a hopeful time. We battled to get to this point and it finally came. We walked in that day not knowing what would happen—it was stress times a million. My sister was in one operating room and my son in another. It was an amazing and fearful time. There is nothing to prepare a family for some- thing like this. How do you thank someone for a gift like this? No Hallmark card that says ‘Thanks for the kidney’ exists. Michael and his aunt did well and were able to leave the hospital within a week.”

If you were a nurse working with this family, what kinds of things would you say? Would you take time to listen as they shared fears and thankfulness? Family nurses learn to be with others during uncomfortable times. Being vulnerable is not easy but it can build trust and relationships.

Michael returned to school. However, the immunosuppressive medications required caused him to have frequent and more severe strokes. Nurses are often unaware of the se- vere side effects of antirejection drugs and the unique challenges faced by individuals and families after transplant and these drugs are taken. His immune system was suppressed or compromised, and he was no longer able to attend school.

THERESA: “This was a turning point for us. In my heart, I began to wonder, ‘Is this the beginning of the end?’ You get to a tipping point logically, where you know this little

314 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 314

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

boy and his body can’t sustain this. For the first time, I saw Michael giving up. He would say, ‘I want to stay on the couch.’ I would tell him how important it was to keep up his strength so that he could return to basketball. He said, ‘I don’t want to go back to basket- ball.’ We were teetering between reality, hope, and possibility.”

Michael’s immune status worsened and he was not able to be in public without risking infection. The family was confined to minimize risk of infection exposure. Families go through difficult times filled with new risks, vagueness, and wariness.

THERESA: “We were grateful to be home as a family. Family and friends left food at the door but couldn’t come inside. It was a sacred time for our family.”

Nurses seldom hear the stories about what happens when families go home. Medical staff members seldom learn what occurs after discharge following successful organ trans- plant. Families are alone as they experience fears, diminished hopes, and frightening times.

Calling on Family Strengths

Resilience is positive functioning and maintenance of competence despite risk or adversity (Supkoff, Puig, & Sroufe, 2012). Identifying family strengths can help a family satisfy needs associated with chronic illness. For example, cancer is a disease of both young and old—yet, little is known how best to support extended families and grandparents as these emotional experiences are faced (Box 11.9). Family stories identify problem solving that has worked in the past. Rather than identify shortcomings, family nurses can identify positive observations and offer praise for successfully accomplishing tasks. Commendations involve the nurse “noticing, drawing forth, and highlighting previously unobserved, forgotten, or unspoken

CHAPTER 11 ● Family-Focused Care and Chronic Illness 315

BOX 11-9

Ex periencing Cancer W ithin a Family

When a child experiences cancer, the family also experiences the illness. It is a family affair. Many children experience cancer and spend many days at inpatient settings. The many painful and invasive treatments are challenges. Family routines are disrupted, emotional distress occurs, member roles change, great uncertainty is faced, and financial hardship often happens. Families manage endless transitions as the child goes through various stages of treatment, illness trajectories, remissions, and relapse. Too often the effects of childhood cancer are not fully appreciative of the effects this illness also has on the family. A comprehensive program of family, psychological, and relational research was used in Alberta Children’s Hospital in Calgary, Canada, to offer a collaborative intervention. The pediatric hematology/oncology/blood and marrow transplant program and the Faculty of Nursing at the University of Calgary formed a partnership that used research findings to influence the nursing curriculum. Relational implies that all human experience occurs within the context of relationships that are systemic and interactional. A large amount of literature about cancer exists; however, little has examined the experiences of grandparents of the diagnosed child. Grandparents have strong emotional experiences while they offer support but receive none themselves. Little was known about how care or practice could be effectively changed. This research is ongoing. Conflicting evidence has shown an equal number of studies find parents and family suffering as a result from the illness, while others do not find this true and find families are strengthened. Comprehensive study of relational factors is being undertaken to determine what causes results and what influences long-term care that families receive. This research and its findings are portals for changes in practice. Reducing the human suffering experienced from an illness condition such as childhood cancer should be part of the treatment plan. Finding better ways to make this happen is an important part of exceptional care guided by evidence-based practice.

2910_Ch11_293-324 05/01/15 11:38 AM Page 315

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

family strengths, competencies, or resources” (Limacher & Wright, 2003, p. 132). Nurses who think family use commendations to encourage family, acknowledge strengths, and praise accomplishments.

Family nurses facilitate positive reframing of hurdles faced by families. They encourage family to talk about positive adaptations, meanings they are discovering in difficult situa- tions, and ways hope is perceived. These are unique experiences. By asking open-ended questions, listening, and reflecting on what families say, nurses can gain new insights. What strengths are described? What kinds of nursing actions can be used to help families adapt? Nurses can acknowledge and help families celebrate thriving in difficult situations.

Overcoming Barriers During Chronic Illness

A common barrier with chronic illness is a tendency to focus on individual symptoms and problems. Individual- and problem-focused care often addresses things not at the top of the family’s list of identified needs (Peyrot et al., 2005). A study of quality of life in children with quadriplegic cerebral palsy found that parents and providers had differ- ent views of what was most important to a child’s quality of life (Morrow, Quine, Lough- lin, & Craig, 2008). While professionals focused on weight gain, families focused on the child feeling loved. In the study, health professionals referred to burdens of the child’s condition on parents, whereas parents viewed the child’s condition as a part of life and a source of joy despite anxieties generated (Morrow et al., 2008). Ask questions about family priorities.

Empow erment

Over time, the amount of trust and decision making families and nurses share will change. Family empowerment is an interactive process that mobilizes resources to satisfy needs (Box 11.10). Empowerment involves nonjudgmental collaboration and willingness to shift responsibilities over time at the pace most appropriate from a family’s perspective (Hulme, 1999). Families often have a high level of dependence on health professionals. The Zimanske family was unfamiliar with the condition and overwhelmed with the diagnosis. They left the hospital in a state of disbelief and emotional shock. They needed information in small doses and follow-up from the providers. Family needs time to think things over, react, and grieve. The pace of information delivery is often based on care providers’ needs rather than family need. Unfortunately, busy medical practices and time-focused clinicians usually give all information at once. Little time is allotted for questions or responses. Families face critical news and are sent on their way still in shock. Care management changes, complications occur, and exacerbations bring new questions. Nurses often assume people know what to do. But many are poorly taught about conditions, and information is not parceled as needed, but given as a single giant dose.

The participatory phase of family empowerment is a challenging time as the balance of power is shifted to the family. The nurse questions the family about their needs as the con- dition progresses. Individuals with a chronic condition and their families become experts and know more about some things than clinicians. A successful shift in this balance of power requires nurses to listen, reflect, and collaborate.

In the collaboration phase, the family is encouraged to become assertive and less reliant on health professionals (Hulme, 1999). Family can independently negotiate roles and re- sponsibilities in family life. The family begins to normalize the chronic condition and adapt. Families might move through empowerment steps in a nonlinear fashion. Nurses who think

316 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 316

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

family are tuned to family’s actions, reactions, words, and requests as medical expertise and family expertise are combined.

Care Coordination

A challenging barrier to family-focused care and chronic illness management is the frag- mentation of care delivery. Various care systems, numerous specialists, and little commu- nication among providers cause care management to be puzzling and exhausting for families. Families need assistance with care coordination. It might help to schedule visits to multiple specialists in the same facility on the same day rather than scheduling multiple returns. Family case managers can help navigate systems and manage care needs such as acquisition and management of equipment, medication adherence, appointment coordina- tion, and efficient use of resources. Families managing chronic conditions need empowering partnerships that put them at the helm of disease and life management.

Various definitions of care coordination make discussion of the topic a challenge (McDonald, Sundarum, Bravata, & Lewis, 2007). We discuss care coordination through a family nursing lens and use nursing processes. Thinking family reminds us that care coordination begins with assurance that family is an active participant. Coordinated care implies that roles pertinent to needs are effectively communicated and information about methods for performing self-care management tasks is provided. Nurses who think family develop family relationships that effectively coordinate care. Things like family identity, cultural preferences, self-care abilities, motivation, and personal beliefs affect care man- agement. Collaboration is needed to ensure that gaps or care duplication is avoided. Competing plans increase the risks of treatment errors and poor outcomes.

Care coordination recognizes that meeting with clinicians is disruptive and plays havoc with daily lives. Although medical visits are essential, they are not easily handled. Infor- mation from practitioners often differs. Sometimes it seems that the left hand does not know what the right is doing. Optimal coordination involves synchronizing treatments, medical visits, and medications to meet individual and family needs.

THERESA: “Care coordination worked well with Michael’s primary pediatric clinic. From the time of diagnosis they wanted to be the liaison between multispecialty care the syndrome demanded. We developed a specific protocol for appointments, which gave sta- bility to weekly and sometimes daily laboratory draws and security in emergency scenarios. That gave us more family time at home, less time on the road, and more normal routines and schedules. Care coordination didn’t go well between the specialty care departments and was a big challenge. Each specialty operated independent of the other and did not

CHAPTER 11 ● Family-Focused Care and Chronic Illness 317

BOX 11-10

Four Phases of Empow erment

Research with families dealing with chronic conditions suggests that many families progress through these four phases of empowerment:

● Professional dominated empowerment ● Participatory empowerment ● Challenging empowerment ● Collaborative empowerment

Source: Hulme, P. A. (1999). Family empowerment: A nursing intervention with suggested outcomes for families of children with a chronic health condition. J ournal of Family Nursing, 5 (1), 33–50.

2910_Ch11_293-324 05/01/15 11:38 AM Page 317

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

serve Michael as a patient or us as a family. It should flow as a team from one to another, each area of care taking responsibility and using their medical expertise and injecting that into the total collaborative process.”

Family-focused care coordination should minimize visits or schedule them in ways that best fit the family schedule. This might mean negotiating appointments so a child can attend soccer practice or enable a father or grandparent to attend clinic appointments. Nurses who think family know communication about care needs must be family communication. Setting reasonable and manageable goals for families is more than doctor visits, treatment, and medicine.

Family Difficulties in Changing Routines

Individuals and families are concerned with symptom control, clinical progress, and usual routines. Life schedules need to accommodate prescribed treatments so they improve qual- ity of life. Adults with heart disease may need to decrease work, assume a less stressful job, or exercise to improve cardiac health. Persons with diabetes may need their family to support them by altering family health routines, physical activity, and medical manage- ment. Not all family members may be supportive and not all families are well organized and positively functioning. Changes increase stress if they alter finances, reduce personal time, alter dietary choices, or limit social life. Families are not always willing to alter per- sonal lifestyles, especially when they don’t understand reasons. Lifetime changes can be viewed as burdens. The weight of caregiving can fall on single persons. Nurses can’t solve family problems, but they can give appropriate help and useful support. Thinking family means helping with integration of new family health routines, accessing needed resources, and setting goals for the most effective care outcomes.

Caring for the Caregivers of Those With a Chronic Illness

THERESA: “I had a routine mammogram that indicated changes. I received a call one af- ternoon from the gynecologist. Michael came into the kitchen, where I was talking on the phone. He could tell by my face that something was wrong, and he thought it was bad news about him. I put the phone down and said, ‘Michael, it’s okay—it’s not about you.’ Then the news hit me: I had breast cancer. I thought, ‘Now what am I going to do?’ I hung up the phone and told Michael about it first. He said, ‘Now I can take care of you, Mom.’”

Theresa had a double mastectomy and a series of surgeries to repair a skin flap. She was unable to physically care for Michael for several months because of the recovery process and pain from these surgeries.

THERESA: “It was a time that our family really needed a strong partnership with care providers. We lived in deep fear. It was especially hard for Jessica. She was 16 and dealing with her brother’s progressive condition, her mother’s breast cancer, and her father’s heart condition. There was much emotion in our home—it became unrecognizable as our home because we are not like that as a family. I dug my heels in deeper. ‘This will not be us!’ As a family, we committed to getting through this. We needed a commitment from our care providers that they would be with us through the process.”

Caregiver fatigue is a barrier to care with chronic illness. Caregivers experience caregiving difficulties and emotional pain. This has been called compassion fatigue in the literature and occurs when an empathic relationship results in a psychological response to progressive and deep-seated stress to prolonged care needs and exhaustion in the caregiver (Lynch & Lobo, 2012). Self-care is important for caregivers. Family nurses can help caregivers anticipate the

318 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 318

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

long haul of chronic illness and help them prepare mentally and practically for future needs (Rolland & Walsh, 2006). Chronic illness is often in the foreground of family life.

THERESA: “In January 2005, Michael developed a fever. He knew when his tempera- ture got to a certain point, we had to go to the hospital. He said, ‘I’ll do whatever it takes to stay home tonight.’ I think he knew that this would be his last night at home—I saw a resolve in him, and there was no fear. I recall him sitting in front of the television watching cartoons with a cool towel on his head, eating popsicles to keep his temperature down until morning. We knew he would be admitted in the morning and it was serious. That night I went into his bedroom and sat on his bed. I had drain tubes in from my surgery. I just stared at him. He woke up and said, ‘What are you doing?’ ‘Just checking,’ I said. That was the last night he was home—he never came home again. He was admitted to the hospital for treatment of a severe infection.”

Theresa stayed at his bedside. Don went to work. Jessica continued school. After a month passed, it was determined Michael needed a bone marrow transplant and chemotherapy. He went into the operating room for a procedure.

THERESA: “Don and I were in the waiting room when a nurse came out of the oper- ating room to tell us that Michael had a massive heart attack on the table just as the pro- cedure started. They had resuscitated him, but they feared that in the process he had a stroke and they were not sure he would survive. They told us to call anyone who wants to see him and tell them to be here within the hour. We called Jessica and other family mem- bers. My family took turns staying with us, holding vigil. Michael survived the day but never woke up. We ultimately decided to stop treatment and he was peaceful.”

Michael died at the age of 13 years. Since his death, Theresa has spent time in a program she calls Be the Change. Through this program she shares her story with nurses, medical students, physicians, and anyone who will listen. She is a strong advocate for what families need when a member has a chronic illness. Learn more about her, Michael, and their family story at her Web site <http://bethechangemn.com/>.

Chapter Summary

Theresa notes, “I believe that when health care providers see and hear the real human be- ings that are involved in the medical story, a stronger connection is made.” Family-focused care in chronic conditions requires nurses to see and hear the people experiencing the con- dition. The family is always intricately connected to chronic conditions that last for years. Nurses who think family understand the connected relationships between family units, their household, and communities as chronic conditions are managed. Family nurses give intentional attention to supporting the family to plan goals and develop strategies linked with conditions. Prior lifestyles are interrupted and new ways need to be structured to meet disease and family needs. Family nurses use coordinated care to meet needs linked with the changes over time as living with the condition evolves. Nurses listen to the family’s story, respect their expertise, and form partnerships with them. Thinking family assists families household members to best manage long-standing situations over time.

Chapter Recognitions

Early work on Chapter 11 was initiated by Wendy Looman, PhD, RN, CNP, an Asso- ciate Professor at the School of Nursing at the University of Minnesota in Minneapolis. Dr. Looman has great expertise and extensive scholarship in areas of special health care

CHAPTER 11 ● Family-Focused Care and Chronic Illness 319

2910_Ch11_293-324 05/01/15 11:38 AM Page 319

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

needs of children. Mary Erickson, DNP, RN, CNP, a long-time employee at Children’s Hospitals and Clinics of Minnesota, also made important contributions. A special expres- sion of gratitude is owed to Theresa Zimanske for generously sharing her family story about Michael and allowing us to share how his chronic condition warranted family- focused care.

REFERENCES

American Nurses Association (2010). Nursing’s social policy statement: The essence of the profession. Silver Spring, MD: Nursesbooks.org.

Angell, R. C. (1936). The family encounters the depression. New York: Charles Scribner. Antonovsky, A. (1979). Health, stress, and coping. San Francisco: Jossey-Bass. Ary, D. V., Toobert, D., Wilson, W., & Glasgow, R. E. (1986). Patient perspectives contributing to

nonadherence to diabetes regimen. Diabetes Care, 9(2), 168–172. Baile, W. F., Tacchi, P., & Aaron, J. (2012). What professionals in healthcare can do: Family caregivers

as members of the treatment team. In R. C. Talley, R. McCorkle, & W. F. Baile (Eds.), Cancer caregiving in the United States. Research, practice, policy (Pt. 1, pp. 103–124). New York: Springer. doi 10.1007/978-1-4614-3154-1_6

Baldwin, M. L., Schultz, I. Z., Rogers, S., & Rogers, E. S. (2011). Stigma, discrimination, and em- ployment outcomes among persons with mental health disabilities. doi:10.1007/978-1-4419-0428- 7_3. Retrieved from http://www.springerlink.com/content/uj14117168838407/fulltext.pdf

Baradaran-Heravi, A., Morimoto, M., Lucke, T., & Boerkoel, C. F. (2011). Schimke immunoosseous dysplasia. Gene Reviews. Retrieved July 24, 2012 from http://www.ncbi.nlm.nih.gov/books/ NBK1376/

Barclay-Goddard, R., King, J., Dubouloz, C., & Schwartz, C. E. (2012). Building on transformative learning and response shift theory to investigate health-related quality of life changes over time in individuals with chronic health conditions and disability. Archives of Physical Medicine and Rehabilitation, 93(2), 214–220. doi:10.1016/j.apmr. 2011.09.010

Beeber, A. S., & Zimmerman, S. (2012). Adapting the family management style framework for families caring for older adults with dementia. Journal of Family Nursing, 18(1), 123–145. doi: 10.1177/1074840711427144

Bethell, C., Kogan, M. D., Strickland, B. B., Schor, E. L., Robertson, J., Newacheck, P. W. (2011). A national and state profile of leading health problems and health care quality for US children: Key insurance disparities and across-state variations. Academic Pediatrics, 11, S22–S33.

Boerkoel, C. F., Takashima, H., Stankiewicz, P., Garcia, C. A., Leber, S. M., Rhee-Morris, L., & Lupski, J. R. (2001). Periaxin mutations cause recessive Dejerine-Sottas neuropathy. American Journal of Human Genetics, 68(2), 325–333.

Boss, P. (1988). Family stress management. Thousand Oaks, CA: Sage. Boss, P. (2000). Ambiguous loss: Learning to live with unresolved grief. Cambridge, MA: Harvard

University Press. Bronfenbrenner, U. (2005). The bioecological theory of human development. In U. Bronfenbrenner

(Ed.), Making human beings human: Bioecological perspectives on human development (pp. 3–15). Thousand Oaks: Sage.

Capen, C. L., & Dedlow, R. (1998) Discharging ventilator-dependent children: A continuing chal- lenge. Journal of Pediatric Nursing, 13(3), 175–184.

Cavan, R. S., & Ranck, K. H. (1938). The family and the Depression. Chicago: University of Chicago Press.

Chen, H-Y., Baumgardner, D. J., & Rice, J. P. (2011). Health-related quality of life among adults with multiple chronic conditions in the United States, Behavioral Risk Factor Surveillance System. Preventing Chronic Disease, 8(1), A09. Retrieved from http://www.cdc.gov/pcd/issues/2011/ jan/09_0234.htm

Child and Adolescent Health Measurement Initiative (2012). Exploring health conditions in the 2009/10 NS-CSHCN. Data Resource Center, supported by Cooperative Agreement

320 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 320

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

1_U59_MC06980_01 from the U.S. Department of Health and Human Services, Health Re- sources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB).

Clifford, G. D., & Clifton, D. (2012). Wireless technology in disease management and medicine. Annual Review of Medicine, 63, 479–492. doi:10.1146/annurev-med-051210-114650

Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K., Simon, T. D., & Srivastava, R. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–538.

Cramer, J. A. (2004). A systematic review of adherence with medications for diabetes. Diabetes Care, 27(5), 1218–1224.

Cystic Fibrosis Foundation Patient Registry: Annual data report 2010. Retrieved on June 25, 2012 from http://www.cff.org/

Denham, S. A. (2003). Family health: A framework for nursing. Philadelphia: F. A. Davis. Denham, S. A., Manoogian, M., & Schuster, L. (2007). Managing family support and dietary rou-

tines: Type 2 diabetes in rural Appalachian families. Families, Systems, & Health, 25(1), 36–52. Eddy, L. L., & Walker, A. J. (1999). The impact of children with chronic health problems on mar-

riage. Journal of Family Nursing, 5(1), 10–32. Fogt, E. J., Dodd, L. M., Jenning, E. M., & Clemens, A. H. (1978). Development and evaluation of

a glucose analyzer for a glucose-controlled insulin infusion system (Biostator). Clinical Chemistry, 24(8), 1366–1372.

Friedman, D., Holmbeck, G. N., DeLucia, C., Jandasek, B., & Zebracki, K. (2009). Trajectories of autonomy development across the adolescent transition in children with spina bifida. Rehabilita- tion Psychology, 54(1), 16–27.

Gavazzi, S. M. (2011). Family development theory. In S. M. Gavazzi (Ed.), Families with adolescents. New York: Springer. doi:10.1007/978-1-4419-8246-9_3

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall.

Halfon, N., & Newacheck, P. W. (2010). Evolving notions of childhood chronic conditions. Journal of the American Medical Association, 303(7), 665–666. doi:10.1001/jama. 2010.130

Hayes, C., Naylor, R., & Egger, G. (2012). Understanding chronic pain in a lifestyle context: The emergence of a whole-person approach. American Journal of Lifestyle Medicine, 6(2), 421–428. doi:10.1177/1559827612439282

Herzer, M., Godiwala, N., Hommel, K. A., Driscoll, K., Mitchell, M., Crosby, L. E., . . . Modi, A. C. (2010). Family functioning in the context of pediatric chronic conditions. Journal of Developmental and Behavioral Pediatrics, 31(1), 26–34.

Hill, R. (1949). Families under stress. New York: Harper & Row. Hulme, P. A. (1999). Family empowerment: A nursing intervention with suggested outcomes for

families of children with a chronic health condition. Journal of Family Nursing, 5(1), 33–50. Institute of Medicine. (2012). Living well with chronic illness: A call for public health action.

Washington, DC: National Academy of Sciences. Jardine, E. (1998). Core guidelines for the discharge of the child on long term assisted ventilation in

the United Kingdom. Thorax, 53, 762–767. Knafl, K. A., & Deatrick, J. A. (2003). Further refinement of the Family Management Style Frame-

work. Journal of Family Nursing, 9(3), 232–256. Knafl, K. A., Deatrick, J. A., & Havill, N. L. (2012). Continued development of the family manage-

ment style framework. Journal of Family Nursing, 18(1), 11–34. doi:10.1177/1074840711427294 Kuhlthau, K. A., Bloom, S., Van Cleave, J., Knapp, A. A., Romm, D., Klata, K., . . . Perrin, J. M.

(2011). Evidence for family-centered care for children with special health care needs: A systematic review. Academic Pediatrics, 11(2), 136–143.

Kung, H. C., Hoyart, D. L., Xu, J., & Murphy, S. L. (2008). Deaths: Final data for 2005. National Vital Statistics Report, 56(10). Retrieved July 23, 2012 from http://www.cdc.gov/nchs/ data/nvsr/nvsr56/nvsr56_10.pdf

Larkin, P., Jahoda, A., McMahon, K., & Pert, C. (2012). Interpersonal sources of conflict in young people with mild to moderate intellectual disabilities at transition from adolescence to adulthood. Journal of Applied Research in Intellectual Disabilities, 25, 29–38.

CHAPTER 11 ● Family-Focused Care and Chronic Illness 321

2910_Ch11_293-324 05/01/15 11:38 AM Page 321

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Lazarus, R. S. (1993). Coping theory and research: Past, present, and future. Psychosomatic Medi- cine, 55, 234–247.

Limacher, L. H., & Wright, L. M. (2003). Commendations: Listening to the silent side of a family intervention. Journal of Family Nursing, 9, 130–150.

Lucke, T., Tsikas, D., Kanzelmeyer, N. K., Boerkoel, C. F., Clewing, J. M., Vaske, B., Ehrich, J.H., & Das, A. M. (2006). Vaso-occlusion in Schimke-immuno-osseous dysplasia: Is the NO pathway involved? Hormone and Metabolic Research, 38(10), 678–682.

Lynch, S. H., & Lobo, M. L. (2012). Compassion fatigue in family caregivers: A Wilsonian concept analysis. Journal of Advanced Nursing, 68(9), 2125–2134 (online issue). doi:10.1111/j.1365- 2648.2012.05985.x

Manoogian, M. M., Harter, L. M., & Denham, S. A. (2010). The storied nature of health legacies in the familial experience of type 2 diabetes. Journal of Family Communication, 10, 1–17.

Maeng, D. D., Martsolf, G. R., Scanlon, D. P., & Christianson, J. B. (2012). Care coordination for the chronically ill: Understanding the patient’s perspective. Health Services Research, 47(5), 1960– 1979. doi:10.1111/j.1475-6773.2012.01405.x

Margolan, H., Fraser, J., & Lenton, S. (2004) parental experience of services when their child requires long-term ventilation: Implications for commissioning and providing services. Child: Care, Health & Development, 30(3), 257–264.

McCubbin, M. A., & McCubbin, H. I. (1989). Families coping with illness: The resiliency model of family stress, adjustment and adaptation. In C. B. Danielson, B. Hamel-Bissel, & P. Winstead-Fry (Eds.), Families, health & illness: Perspectives on coping and intervention. St. Louis: Mosby.

McDonald, K. M., Sundarum, V., Bravata, D. M., & Lewis, R. (2007). Closing the quality gap: A critical analysis of quality improvement strategies. Care Coordination (Vol 7). Report No. 04(07(0051-7). Rockville, MD: Agency for Healthcare Research and Quality

Morrow, A. M., Quine, S., Loughlin, E. V. O., & Craig, J. C. (2008). Different priorities: A compar- ison of parents’ and health professionals’ perceptions of quality of life in quadriplegic cerebral palsy. Archives of Diseases in Childhood, 93, 119–125. doi:10.1136/adc.2006.115055

Mortimer, J. T. (2012). The evolution, contributions, and prospects of the Youth Development Study: An investigation in life course social psychology. Social Psychology Quarterly, 75(1), 5–27.

Moules, N. J., Laing, C., Morck, A., & Toner, N. (2011). Stepping into the middle: Family research in pediatric oncology. In E. K. Svavarsdottir & H. Jonsdottir (Eds.), Family nursing in action (pp. 271–284). Reykjavik, Iceland: University of Iceland.

Noyes, J. (2007). Comparison of ventilator-dependent child reports of health-related quality of life with parent reports and normative populations. Journal of Advanced Practice Nursing, 58(1), 1–10.

National Institutes of Health. (2014). Schimke immune-osseous dysplasia. Retrieved September 4, 2014 from ghr.nlm.nih.gov/condition/schimke-immuno-osseous-Dysplasia

Patterson, J. (1988). Families experiencing stress: The family adjustment and adaptation response model. Family Systems Medicine, 5(2), 202–237.

Peyrot, M., Rubin, R. R., Lauritzen, T., Snoek, F. J., Matthews, D. R., & Skovlund, S. E. (2005). Psychosocial problems and barriers to improved diabetes management: Results of the crossna- tional Diabetes Attitudes, Wishes, and Needs (DAWN) Study. Diabetic Medicine, 22, 1379–1385.

Ray, L. D. (2003). The social and political conditions that shape special-needs parenting. Journal of Family Nursing, 9(3), 281–304.

Rempel, G. R., Blythe, C., Rogers, L. G., & Ravindran, V. (2012). The process of family management when a baby is diagnosed with a lethal congenital condition. Journal of Family Nursing, 18(1), 35–64. doi:10.1177/1074840711427143

Risdal, D., & Singer, G. H. (2004). Marital adjustment in parents of children with disabilities: A his- torical review and meta-analysis. Research & Practice for Persons with Severe Disabilities, 29(2), 95–103.

Rolland, J. S., & Walsh, F. (2006). Facilitating family resilience with childhood illness and disability. Current Opinion in Pediatrics, 18, 527–538.

Seligman, M., & Darling, R. B. (2007). Effects on the family. In M. Seligman & R. B. Darling (Eds.), Ordinary families, special children (3rd ed., pp. 181–217). New York: Guilford.

Selye, H. (1976). The stress of life (rev. ed.). New York: McGraw-Hill.

322 CHAPTER 11 ● Family-Focused Care and Chronic Illness

2910_Ch11_293-324 05/01/15 11:38 AM Page 322

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Simon, J. B., Murphy, J. J., & Smith, S. M. (2005). Understanding and fostering family resilience. The Family Journal, 13(4), 427–436. doi:10.1177/1066480705278724

Smith, S. M., Soubhi, H., Fortin, M., & O’Dowd, T. (2012). Interventions for improving outcomes in patients with multimorbidity in primary care and community settings (review). Cochrane Data- base of Systematic Reviews, 4, CD006560. doi:10.1002/14651858.CD006560.pub2

Sperry, L. (2011). Spiritually competent practice with individuals and families dealing with medical conditions. The Family Journal, 19(4), 412–416. doi:10.1177/1066480711417236

Supkoff, L. M., Puig, J., & Sroufe, L. A. (2012). Situating resilience in developmental context. In M. Ungar (Ed.), The social ecology of resilience: A handbook of theory and practice (pp. 127–142). New York: Springer. doi:10.1007/978-1-4614-0586-3_12

Tennant, P. W., Pearce, M. S., Bythell, M., & Rankin, J. (2010). 20-year survival of children born with congenital anomalies: A population-based study. Lancet, 375, 649–656. doi:10.1016/S0140- 6736(09)61922-X

Venter, A., Burns, R., Hefford, M., & Ehrenberg, N. (2012). Results of a telehealth-enabled chronic care management service to support people with long-term conditions at home. Journal of Telemedicine and Telecare, 18, 172–175.

Walsh, F. (2012). Facilitating family resilience: Relational forces for positive youth development in con- ditions of adversity. Social Ecology of Resilience, 4, 173–185. doi:10.1007/978-1-4614-0586-3_15

West, C., Usher, K., & Foster, K. (2011). Family resilience: Towards a new model of chronic pain management. Collegian, 18(1), 3–10.

Wiegand, D. L. (2012). Family management after the sudden death of a family member. Journal of Family Nursing, 18(1), 146–163. doi:10.1177/1074840711428451

World Health Organization (2002). Innovative care for chronic conditions: Building blocks for action: Global report. Geneva: WHO.

CHAPTER 11 ● Family-Focused Care and Chronic Illness 323

2910_Ch11_293-324 05/01/15 11:38 AM Page 323

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

2910_Ch11_293-324 05/01/15 11:38 AM Page 324

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:21.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Family-Focused Nursing Actions Sandra K. Eggenberger ● Wendy Looman

C H A P T E R 14

C H A P T E R O B J E C T I V E S

1. Explain core processes from nursing and family perspectives. 2. Describe relationships among family, family context, core processes, and family-focused nursing

practices. 3. Discuss ways core processes are linked to health. 4. Identify ways nurses can use core processes to design nursing actions. 5. Describe family-focused nursing actions that lead to quality care outcomes.

C H A P T E R C O N C E P T S

● Caregiving ● Cathexis ● Celebration ● Change ● Communication

● Connection ● Coordination ● Core processes ● Family meetings ● Nursing actions

Introduction

In family-focused nursing practice, care involves intentional actions, family partnerships, and thinking family. Although actions are often specifically targeted to fulfill individual needs, they aim to optimize family health. Family nursing is holistic care for family units regardless of the nursing action being implemented. The Family Health Model (Denham, 2003) describes core family processes as part of the functional domain. Core processes attend to ways family members interact; they are potential areas of strengths. These processes are also linked with wellness, health, prevention, illness, care management, and other related needs. The seven core family processes—communication, caregiving, cathexis, celebration, change, connectedness, and coordination—are used to guide assess- ment, nursing actions, and outcome evaluation. Core processes are central to individual and family health.

375

2910_Ch14_375-408 05/01/15 12:30 PM Page 375

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Nurses who think family use the individual-nurse-family partnership to identify goals and plan actions directly linked to safe, therapeutic, and quality care outcomes. Nurses use core family processes to identify strengths, address health concerns, minimize health risks, and maximize health potentials (Denham, 2003) so they can identify and design strategic actions for family unit needs. Nurses who think family know that health and ill- ness can never be separated from the daily lives in shared family households. This chapter describes ways nurses use core processes to empower and support family units as they strive for member and family health. Relevant nursing actions and evidence related to each of the core process are presented.

Family-Focused Nursing Actions

Even when the family is not physically present, the family remains a significant force in the lives of persons seeking health or illness care. Therefore, family nursing actions are critical to all health and illness outcomes. The nurse can still think family even when focusing on individual needs. Individual care is directed toward the family unit because current evidence shows strong links between individual and family health (Kaakinen, Harmon Hanson, & Denham, 2010; Weihs, Fisher, & Baird, 2002). However, more re- search aimed at development, testing, implementing, and evaluating the effectiveness of nursing actions with the family unit is needed (Chesla, 2010).

The Family Health Model focuses on core family processes and provides a framework to plan, guide, and evaluate nursing actions (Denham, 2003). Delivering competent, safe, and quality care demands nursing actions that guide and evaluate progress toward individual and family goals. Action implies doing and influencing (Abate, 2002).

Nursing is a practice discipline and actions must be skillfully completed using relational and scientific elements (Chinn, 2008; Dahnke & Dreher, 2011). Effective family-focused nursing care considers the unique nature, experience, strengths, chal- lenges, and needs of family units (Almasri et al, 2011; Siminoff, Wilson-Genderson, & Baker, 2010). These actions consider the family’s beliefs, values, patterns, functioning, and culture (Kaakinen, Gedaly-Duff, Coehlo, & Harmon Hanson, 2010; Pavlish & Pharris, 2012).

Delivering Family-Focused Nursing Actions

When planning, delivering, and evaluating care, nurses have an obligation to partner with a family about the course of actions to be taken (American Nurses Association, 2001). Several elements of a nursing action need to be considered. First, who is the re- cipient of the nursing action? Is the action aimed specifically toward unique persons or the family unit as a whole? Even in a situation in which the nurse is focused on an individual’s acute care needs, there is still the opportunity to address and meet the needs of multiple household members (Fig. 14.1). Nurses can communicate with ill persons or arrange a family meeting to resolve caregiving decisions. At times the family unit is the direct care recipient, such as when a family is negotiating end-of-life care.

Second, nursing actions address the variable of concern or what can be influenced. What elements of the family’s experience, strengths, and needs are or are not being met? Do the nursing actions aim to increase family communication or ease suffering? Does the action focus on anxiety about caring for an ill or dying member? Communication must be clear and directed at the need.

376 CHAPTER 14 ● Family-Focused Nursing Actions

2910_Ch14_375-408 05/01/15 12:30 PM Page 376

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Third, consider the setting. Does the nursing action take place in an acute care hospital, a clinic, or the family’s home? What factors need to be addressed in this setting? What coordination needs to occur among care settings with multiple medical providers? Care needs influence the direction of nursing actions and nurses’ skills influence the effectiveness of the care delivered (Nelms & Eggenberger, 2010; Newman, 2008). Does the nurse inten- tionally include the family in care?

Care Models to Guide Nursing Actions

Evidence that family-focused nursing actions can improve health and illness outcomes exists, but family interventions still need to be fully developed and used in nursing prac- tice (Chesla, 2010; Duhamel, 2010). A variety of models that address family nursing actions exist. Earlier in this text (Chapter 7), four particular models to guide nursing practice were discussed: the Illness Beliefs Model, Calgary Family Intervention Model, Family Health System Model, and Family Management Style Framework. The Illness Be- liefs Model focuses on strengthening and facilitating beliefs and challenging constraining ones (Wright & Bell, 2009). The Calgary Family Intervention Model (CFIM) focuses on cognitive, affective, or behavioral domains of family functioning (Wright & Leahey, 2012). The CFIM suggests that interventions to promote, improve, or sustain family functioning should be offered (Wright & Leahey, 2013). The Family Health System (FHS) Model describes family realms of development, interaction, coping, integrity, and health processes, and suggests nursing actions in these areas (Anderson & Tomlinson, 1992). The Family Management Style Framework (FMSF) explains ways families respond to enduring children’s chronic illness by examining the component of definition of the situation, management behaviors, and perceived consequences (Knafl, Deatrick & Havill, 2012).

N ursing Actions Focused on Family C ore Processes

Family interviews are nursing actions that provide nurses with the opportunity to better understand members and household concerns in the initial and ongoing assessments (Nelms & Eggenberger, 2010; Wright & Leahey, 2013). Exploration of family processes during these assessments can be used to intentionally plan tailored interventions that are designed to meet unique family unit needs. Directing nursing care to family processes facilitates a

CHAPTER 14 ● Family-Focused Nursing Actions 377

FIGURE 14 -1 Multiple family members have various needs for nursing care.

2910_Ch14_375-408 05/01/15 12:30 PM Page 377

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

partnership to support family units as goals are set, plans are developed, and actions taken to identify strengths and concerns (Denham, 2003).

Core Family Processes

Core family processes provide ways to approach families and assist them to plan for needed changes. Process implies a course of action, series of changes, and progress (Abate, 2002). Families live their lives differently as they face health problems, manage illnesses, and work to prevent diseases or complications (Rolland & Walsh, 2005). On- going interactions among household members influence well-being and family health (Denham, 2003). If a parent experiences an acute illness it may disrupt prior patterns and roles and may create conflict. Chronic conditions can challenge members’ abilities and stretch their limits. Nurses can assist families in developing plans, understanding re- sponses, planning for the future, and managing needs (Chesla, 2010; Kaakinen et al, 2010; Segrin & Flora, 2011).

Core Processes— A Framew ork for Nursing Actions

Family processes can be disrupted when illness or a crisis strikes, and core processes can help guide assessment and suggest areas for nursing actions that can help (Denham, 2003). Figure 14.2 shows a range of nursing actions that can be used with families; each of these actions may be appropriate in different situations and in support of the various core processes. Figure 14.3 depicts linkages of nursing action, core processes, and targeted care outcomes for family units (Denham, 2003). Figure 14.4 identifies collaborative relation- ships for provision of coordinated care.

Nurses who think family consider the location and type of family household, as well as the neighborhood and community, which can influence planning, implementation, and

378 CHAPTER 14 ● Family-Focused Nursing Actions

Guide

Assessment of Core Processess

Listen

Counsel

Champion

Praise

Demonstrate

Instruct

Advocate

Teach

Assess Explain

Family Nursing Actions

Ce le

br at

io n

C o

n n

e c te

d n

es s

C

ha ng

e C

aregiving Communication C o

o rd

in a tio

n C

athexis

Nurses assess core processes of indviduals and family units, and then use nursing actions to plan, implement, and evaluate care.

Support

Comfort

Accompany

FIGURE 14 -2 Nursing actions, and core processes.

2910_Ch14_375-408 05/01/15 12:30 PM Page 378

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 14 ● Family-Focused Nursing Actions 379

Family Health Model (assess needs in

contextual, functional, and structural domains)

Nursing Actions Aimed

at Individual and Family Unit

Care Needs

Core Processes

Individual and Family Unit Care

Outcomes

FIGURE 14 -3 The Family Health Model: family needs and care outcomes.

evaluation of care. Family-focused nursing actions view the core processes of the family sys- tem within the community and societal systems. Although time is not depicted in Figure 14.4, it is considered as its passing means development, social, and political changes that affect care needs. The nurse can use a framework of core family processes to identify family strengths and incorporate these into the plan for care, set goals, and evaluate outcomes. The individual-nurse-family partnership is used to set goals and plan ways to achieve them.

Health Care Professionals

Care Coordination

Health and Illness Care

Services

Individual and Family Members

Community Cont ext

Fam ily-Focused Nurses

FIGURE 14 -4 Nursing actions in care coordination.

2910_Ch14_375-408 05/01/15 12:30 PM Page 379

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Using Core Processes to Meet Complex Care Needs

Core processes are not discrete; they are connected to the life surrounding the family. Family units have complex interactions with the larger community. Core processes can be used to understand ways particular families respond to life experiences and daily life that affect family health. Nurses who think family know family members live interdependent lives, with shared experiences linked to life outside their household boundaries. Although personality, motivation, genetics, and other factors influence lives, these factors are bound to environmental factors often beyond their control. Family-focused nurses understand that continuity of care reaches beyond the walls of health care settings. Change is certain in families with multiple transitions, but they are still a family. However, the meanings of these transitions to the family must be considered when planning nursing actions. A nurse’s challenge is to help families identify solutions they value and offer support that empowers them to adjust to change and make needed changes in their own world.

Intentional Nursing Actions to Guide Core Family Processes

Core family processes provide ideas about ways family nurses can assist family units to at- tain, maintain, and regain health and manage illness experiences. Nurses act as advocates, guides, coaches, teachers, coordinators, counselors, and evaluators (Hamric, Spross, & Harmon Hanson, 2009; Kaakinen, 2010). Intentional actions are necessary to address care needs. An ecological point of view can guide intentional thinking and acting to address needs in a complex world. Family nurses know that effective actions are singularly focused but must address the complexity that surrounds interactions. Family connections beyond household boundaries and within the community create potential threats and supports. Social and political realms might seem outside the family, yet they may intensify threats and strengthen supports linked with health and illness. An ecological perspective helps one see community linkages, and social networks are windows to risks and strengths. Core processes address broad factors associated with individual and family health.

Nurses who think family use evidence to support actions. Living with illness, maintaining health, or preventing disease are not singular actions, but involve complicated family system interactions with social and institutional networks. As nurses identify health in relationship to the family unit’s past, present, and future, core processes offer a framework for addressing needs. They inform the planning, development, and evaluation of nursing actions that meet a breadth of health and illness experiences across the life span. Table 14.1 lists the core processes suggested by the Family Health Model (Denham, 2003) and provides examples of assessments, actions, and evaluation strategies to be used in nursing practice. Interview questions, family dialogue, and conversations are used during assessment and care. This intentional nursing action invites reflection, relationship development, and inquiry. Use of core processes suggests goals or outcomes to evaluate as care is planned.

Case Introduction

This chapter refers to the Zimanske family, previously introduced in Chapter 11 as a family experiencing chronic illness. The family includes Michael, diagnosed with Schimke immune-osseous dysplasia (SIOD) at age 7, a sibling named Jessica, and parents Theresa and Don. This family experienced an unexpected journey filled with times of uncertainty and struggles. An obscure diagnosis was followed by years of illness and multiple acute exacerbations requiring hospitalization. The family experienced other member illnesses during this time. Throughout this section of the chapter content related to the core process

380 CHAPTER 14 ● Family-Focused Nursing Actions

2910_Ch14_375-408 05/01/15 12:30 PM Page 380

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 14 ● Family-Focused Nursing Actions 381

TABLE 14 -1 Core Family Process: A ssessment and Family -Focused Nursing A ction

CORE FAMILY FAMILY NURSING FAMILY-FOCUSED PROCESS ASSESSMENT NURSING ACTION EVALUATION

Cathexis

Communication

Caregiving

Create and discuss a family genogram and ecomap with family members.

Explore a family’s emotional connections.

Sample question: Can you tell me how

your family members are linked to each other?

This must be difficult for your family to see your son and brother’s condition constantly deteriorating.

How would you describe your family’s communication about this illness?

In what ways does your family’s communication influence health?

What type of care does your family member require from your family?

Can you describe how your family cares for members?

What is the most difficult part of caring for your family member?

What is the most positive element of caring for your family member?

Discuss the differences in ways family members view health and illness experiences and the influence on the emotional bonds.

Allow time for reflection on family connections (Moules, Thirsk, & Bell, 2006).

Discuss aspects of grief using intergenerational perspectives (O’Leary, Warland, & Parker, 2011).

Explore the ongoing nature of grief.

Arrange a family meeting focused on developing individual understandings about needs and coping of the family unit.

Guide family discussion of family needs.

Explore with the family data collected during creation of the genogram and ecomap.

Identify member roles in providing care for the ill individual.

Describe support needed for family caregiving roles.

Find ways family can access needed resources.

Commend members for strengths in caregiving roles.

Identify priority concerns related to caregiving roles in the family.

K nowledge of family structure, function, and relationships are evident to health care providers.

Family begins to explore their relationships and influence on health promotion, maintenance, and illness care.

Family members express improved comprehension of beliefs about illness, coping, emotions, responses, and communication.

Family members describe communication patterns that support health.

Families set goals for improving communication.

Concerns about priority areas of caregiving identified are resolved.

Family members are building on strengths in caregiving roles.

C o n t in u e d

2910_Ch14_375-408 05/01/15 12:30 PM Page 381

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

382 CHAPTER 14 ● Family-Focused Nursing Actions

TABLE 14 -1 Core Family Process: A ssessment and Family -Focused Nursing A ction— cont’ d

CORE FAMILY FAMILY NURSING FAMILY-FOCUSED PROCESS ASSESSMENT NURSING ACTION EVALUATION

Celebration

Change

Connections

Help family communicate about stress and strain of caregiving.

Identify possible ways family can continue valued family traditions.

Create a list of celebrations that can still occur and note needed modifications.

Consider options for new activities to share in the future.

Identify family beliefs that support healthy changes (Wright & Bell, 2009).

Coach ways to move toward positive health changes (Hamric, Hanson, Tracy, & O’Grady, 2014).

Commend strengths (Wright & Leahey, 2013).

Provide information about local support services or groups.

Discuss ways family can fulfill family roles and responsibilities and still care for self.

Identify ways members can access supports (e.g., church, friends, social networks).

Explore ways the Internet can be used to link with those experiencing a similar condition.

How can I most help you as you care for your ill family member?

Tell me the ways your family enjoys spending time together?

What are times that you enjoy being together?

How does your family usually celebrate a holiday?

What changes do you foresee will need to occur so that your family can enjoy special time together?

Can you describe the most difficult change you and your family will need to make as a result of this chronic illness?

Describe concerns about family routines that will need to change.

Examine social connections in the ecomap developed with the family.

What ways are you involved with the community?

Tell me about your relationships with your health care providers.

How do your social networks provide needed support?

Family’s celebrations, rituals, and routines are viewed as meaningful.

Family activities are viewed as special and valued times.

Family members identify specific steps to making needed changes.

Family members discuss ways conflicts can be negotiated

Arrangements are made for needed changes.

Family members maintain caring relationships that provide needed support.

Individuals have adequate personal time each week.

Respite care is arranged through a network of neighbors and other friends.

2910_Ch14_375-408 05/01/15 12:30 PM Page 382

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 14 ● Family-Focused Nursing Actions 383

TABLE 14 -1 Core Family Process: A ssessment and Family -Focused Nursing A ction— cont’ d

CORE FAMILY FAMILY NURSING FAMILY-FOCUSED PROCESS ASSESSMENT NURSING ACTION EVALUATION

Coordination Identify available community resources that can support the family.

Provide a list of social agencies where additional care services might be accessed.

Contact health care provider(s) about a referral to social services for needs in the home.

How does your family work together to coordinate care for your family member?

What are the biggest struggles that your family experiences as you try to coordinate available services with needs?

Family members develop a schedule that identifies who will regularly perform various tasks.

The nurses, social worker, and family arrange for needed home services.

will be introduced with quotes from the family providing the opportunity to apply the knowledge. This case illustrates ways nurses can use core processes to facilitate family- ocused nursing actions. The narratives are linked with core family processes to demonstrate family needs and nursing actions.

Cathex is: Core Family Process

Cathexis is “the emotional bond that develops between individuals and family as members invest emotional and psychic energy into loved ones” (Denham, 2003, p 125). This term is a useful way to understand the attachment that develops among family members. Bonds are often expressed as warmth, care, love, and regard—factors that promote family health (Denham, 2003). Childhood attachments continue into adulthood and throughout family life act as driving forces for family functioning and routines (Wood, Klebba, & Miller, 2000). Family members depend on one another for emotional, physical, and economic support (Denham, 2003).

Cathexis refers to family members’ invested efforts in one another as they rely on and care for one another. Decathexis is the disconnecting or disentangling needed when a family member grieves the loss of a close attachment following death or other loss (Denham, 2003; Rando, 1984). Decathexis occurs as those left alone learn to separate their lives from persons or things once essential in life. Grief experts suggest loss is an evolving disconnec- tion from the deceased that allows the family to continue life without a person (Moules, Simonson, Fleiszer, Prins, & Glasgow, 2007; Moules, Simonson, Prins, Angus, & Bell, 2004). Decathexis causes separation and interrupts attachments. Divorce or diseases that affect a member’s proximity and personhood (e.g., Alzheimer’s disease) create needs for decathexis. Cathexis is about strengthening attachments and relationships for the good of individual members and the family unit.

C ath ex is as a Family- Focused N ursing Action

Commitment and attachment are central to family life with bonds developing as members are added to the family unit (Boss, Doherty, LaRossa, Schumm, & Steinmetz, 1993). The nurse can use an understanding of cathexis to support healthy family bonds. For example,

2910_Ch14_375-408 05/01/15 12:30 PM Page 383

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

384 CHAPTER 14 ● Family-Focused Nursing Actions

BOX 14-1

Evidence-Based Family Nursing Practice

Living with advanced lung disease can be a challenging experience for individuals and their family members, an area of care not often addressed in the literature. Treatment often occurs as episodic and isolated events focused on individual needs; rarely is chronic obstructive pulmonary disease (COPD) viewed as a family event. Individual’s symptoms of breathing difficulties, fatigue, malnutrition, anxiety, and depression are likely to increase over time. Costs to families such as caregiver burden and increased care expenditures are reasons this is a serious chronic condition. An outpatient clinic at Landspitali University Hospital in Reykjavik, Iceland, uses a nurse clinic for persons with breathing problems. The focus is on the unmet health care needs of individuals and family members. A holistic approach and collaborative partnership occur between the family unit and health professionals. A nursing partnership framework is used to focus on the entirety of health- related problems to foster possibilities. Through a relational dialogue, areas of family involvement, living with symptoms, and access to health care are addressed. The dialogue allowed meanings to emerge that were then acted upon. Nurses focused on positive regard, building trust, and respect for personal values and ways of being. As all think together, whatever emerges as the concerns becomes the focus of the care. Using both quantitative and qualitative research methods, the number of hospitalizations showed about an 80% decrease. Individuals reported a more satisfactory quality of life and a decrease in symptoms caused by the disease. Families gained greater capacity to manage the disease at home as they better understood the disease and the consequences of actions and gained independence in care decisions. Nurses established trusting relationships that enabled more coherent actions to be taken. Health professionals became more accessible and interactions more meaningful.

Source: Ingadottir, T., & Jonsdottir, H. (2010). Partnership-based nursing practice for people with chronic obstructive pulmonary disease and their families: Influences on health-related quality of life and hospital admissions. J ournal of Clinical Nursing, 1 9 (19/20), 2795–2805. doi:10.1111/j.1365-2702.2010.03303.x

after a child is born, nurses support bonding between parent and newborn and teach skills to care for and protect the baby. Children and adults need similar bonding in their shared lives to influence health. Commitment among family members in particular and across family units varies. An individual’s health affects the family unit and family health affects individual members (Kaakinen et al., 2010). Emotional bonds unite families and strong committed support is a foundation to build upon. These bonds are threatened when dis- ruptions and conflicts occur and during times of stress and illness (Eggenberger & Nelms, 2007; Siminoff et al., 2010). Box 14.1 describes a program of research that addresses the individual-nurse-family partnership.

Nurses can focus on cathexis during transitions and changes surrounding illness, se- vere stress, or death (Moules, Thirsk, & Bell, 2006; O’Leary, Warland, & Parker, 2011). Box 14.2 identifies potential concerns linked with the cathexis process—commitment, loss, grief, chronic sorrow, and ambiguous loss—which are areas for identifying nursing actions. Grief and loss are expected life aspects, but are difficult for most people. Chronic sorrow lacks a predictable end and can occur when living with a disability or an increas- ingly worsening chronic illness. This sorrow occurs with childhood problems and also with older persons’ caregivers (Burke, Eakes, & Hainsworth, 1999; Moules et al., 2007; Zerwekh, 2006). Ambiguous loss occurs with physical or psychological absence or if a body is missing because of a natural disaster (Boss, 2006; Garwick, Detzer, & Boss, 1994). Loss triggers needs for family members to cling together; hence, cathexis or drawing together often needs to occur.

2910_Ch14_375-408 05/01/15 12:30 PM Page 384

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

C ase Study Ap p lication: Family Illness and C ath ex is

Throughout Michael’s chronic illness, the Zimanske family experienced needs and con- cerns linked with cathexis. The family was strongly connected at the time of diagnosis and during illness, but members lived independent lives and a shared journey with chronic illness. Chronic sorrow was a recurring part of their lives each time Michael faced a critical change. As he moved from walking to a scooter to a wheelchair to attend school they faced grief and sorrow. Theresa struggled to keep Michael in school to be with friends and normalize life. Family members had continuous losses as the disease progressed. Life was a roller-coaster with remissions interrupted by exacerbations. Nurs- ing actions to address chronic sorrow would have been useful throughout the illness and even after his death. The Zimanskes lived with the unending nature of the illness, emo- tional pain, and loss over time. Even after Michael’s death, anniversaries were reminders of hopes and dreams unfulfilled. Some families bond more closely together as they share experiences known only to them. Sometimes conflicts and internal stress develop because individuals pull away as they grieve differently. Cathexis is about coming together as a family to strengthen bonds, stretch capacities, and make use of limited resources.

THERESA: “Our family had a strong emotional attachment to each other and the fam- ily. Michael’s illness was a grief process over time. We were mad and angry about the diagnosis. It was hard to hear that my son was chronically ill and would die. Jessica, Michael’s sister, had a big role in the illness and her bonds with Michael were strong. Yet, nurses often consider the parents with an ill child, but not the sibling. When I was diagnosed with breast cancer I was forced to think about myself and what my possible loss could mean for the family.”

Table 14.2 identifies aspects of cathexis, areas of strengths, and potential concerns that often emerge in family life. Focused nursing actions and possible evaluation methods are proposed. Family assessments are actions that help the nurse and the family gain understandings of family strengths and find ways to build on those strengths.

CHAPTER 14 ● Family-Focused Nursing Actions 385

BOX 14-2

Phenomena Related to Cathex is

Family commitment and affiliation: Bonds develop between family members and unit.

● Family transitions may require committed supports for health and illness care (Meleis, 2010).

Loss: Family loses an attachment to a person or object through life-changing and family experience.

● Grief involves working to incorporate loss into life and move forward. ● Complicated loss may suggest need for referral to family support services (Holtslander &

McMillan, 2011; Moules, Simonson, Fleiszer, Prins, & Glasgow, 2007; Worden, 2009).

Chronic sorrow : Ongoing emotional response that ebbs and flows when a functional loss occurs in oneself or another attached person

● Recurring and pervasive loss with no predictable end triggered by events that remind one of the continuous gap between what might have been and realities faced

● Often triggered by events that remind one of the continuous gap between what might have been and realities faced (Eakes, 1993; Eakes, Burke, & Hainsworth, 1998; Isaakson & Ahlstrom, 2008; Lindgren, Burke, Hainsworth, & Eakes, 1992; Melvin & Heater, 2004; Moules et al, 2007).

Ambiguous loss: Absence of a person either physically or psychologically

● Examples of physical absence could be a war causing a family member’s death, divorce in the family, or child’s death. Psychological absence can be a family member’s depression or neurological disorder, such as Alzheimer’s disease (Boss, 2006).

2910_Ch14_375-408 05/01/15 12:30 PM Page 385

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

TABLE 14 -2 Potential A reas of Focus in Cath ex is

NURSING ASSESSMENT FAMILY-FOCUSED NURSING ACTION EVALUATION

Commitment and affiliation within the family unit and individual members: Explore genogram and ecomap to identify strengths and needs related to family bonds.

Loss: Use assessment

techniques that invite family dialogue and nurse-family conversation.

Chronic sorrow: Assess chronic sorrow

using instrument such as Chronic Sorrow Q uestionnaire (Burke, 1989).

Therapeutic communication, such as:

Tell me about you, your family, and this illness.

Ambiguous loss: Explore family’s

perception of loss.

Recognize cultural and individual variations in the view of family commitment (Giger & Davidhizar, 2007).

Help family to develop skills and techniques that facilitate attachment and commitment (Veltri, 2010).

Observe and praise behaviors of warmth and care that develop between parents and children, new members of a family, and societal networks (Davidson, London, & Ladewig, 2012).

Explore changes in family dynamics and relationships during times of transitions with additions or changes in family members (Meleis, 2010).

Recognize cultural and individual variations in the view of loss for each family (Shaefer, 2010).

Invite family members to express grief, and listen to the answer of each family member (Shaefer, 2010).

Provide accurate information about the death, loss, and grief (Shaefer, 2010).

Acknowledge and discuss family members’ various forms of coping with the loss and encourage family members to talk with each other (Segrin & Flora, 2011).

Statements such as: “ I am so sorry for your loss. This must be a

difficult experience for you and your family.” Q uestions such as: “ How can I help you? ” Then, listen to the answer

of each family member (Shaefer, 2010). Assist family in grief work though efforts such as

finding meaning in the experience (Moules, Simonson, Gleiszer, Prins, & Glagow, 2007).

As appropriate, refer family members to needed and available resources (McDaniel, Campbell, Hepworth, & Lorenz, 2005).

Validate the presence of chronic sorrow with the family and provide reassurance of the normality of this reaction (Bettle & Latimer, 2009; Isaakson & Ahlstrom, 2008).

Assist family members in recognizing and building on existing strengths (Bettle & Latimer, 2009).

Assist family as they attempt to find meaning in loss (Boss, 2006).

Guide individual family members and the family in planning the future (Boss, 2006).

Assist family members as they identify individual and family past strengths and develop sources of support (Boss, 2006).

Bonds within and outside the family unit develop that promote health of members and family unit.

Members and family unit function to address needs linked with activities of daily living and meeting goals.

Individuals and family experience losses, but manage in ways that support health and well-being of all members.

Individuals understand that grief processes may differ, but look for ways to communicate needs and concerns to each other.

Individuals and family recognize problems associated with chronic sorrow and develop strategies to effectively manage problems.

Individuals and family express understandings about the meanings of loss and identify specific ways to manage uncertainties over time.

2910_Ch14_375-408 05/01/15 12:30 PM Page 386

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Communication: Core Family Process

Family communication is a continuous, complex, and changing process that affects the mental and physical well-being of individuals and family units (Segrin & Flora, 2011; Weihs et al, 2002). As a core process, communication is used to interact around needs related to health and illness. Communication patterns are shaped in families by their unique histories, life experiences, and current events. Family systems form different communication patterns as individual, dyadic, and triadic forms influence family routines and rituals (Denham, 2003; Segrin & Flora, 2011). Mutually supportive member relationships and clear direct communication about an illness and its management can contribute to individual and family health (Denham, 2003; Weihs et al, 2002).

The complex nature of family communication emerges from the extensive relationships and influencing factors within the family unit and beyond. Ongoing interactions among family members and their extended network can be continual communication challenges. Social networks can act as strengths or threats. Interactions with nurses and health care professionals during times of illness bring additional layers of complexity to communica- tion. Families also must grapple with competing messages received from the media, com- munity, and political milieu. Multiple networks of formal and informal communication confront families daily.

C ase Study Ap p lication: C ommunication Among Family Members

Family communication patterns are worthy of attention during illness experiences. Some families have continuous open dialogue about health and illness. Other families manage silently with little attention given to health or illness. Although people do not speak every- thing on their minds, lack of shared concerns about health or illness can make changes difficult. Usual forms of communication can intensify during times of crisis or stress. Communication can become a strength to build upon, while some techniques can cause conflict and be disruptive (Segrin & Flora, 2011). Effective or ineffective communication not only influences member relationships, but also influences abilities to interact with health providers around health and illness. For example, family communication filled with criticism and blame can lead to hostility and discord, creating more individual or family health risks (Weihs et al, 2002). Silence and avoidance about an illness can contribute to suffering, turmoil, and disagreements (Wittenberg-Lyles, Goldsmith, Ragan, & Sanchez-Reilly, 2012; Zhang & Siminoff, 2003). Nurses who think family know the importance of discourse to facilitate meaningful conversations around health, illness, and caring actions. Families experiencing illnesses and related challenges can be additionally burdened with ineffective communication to manage existing problems or needs.

THERESA: “With seven brothers and sisters in my family it can be a challenge to com- municate, but we put everything on the table. We had open and honest discussions about what was happening and going to happen. My husband’s family had a different style of communication that made it difficult for our extended families to manage and deal with Michael’s illness.”

Clear communication between families and nurses is critical to health and illness experiences. Members experience emotions, navigate the health care system, manage multiple concerns linked with illness, and learn necessary actions linked with disease self-management (Chesla, 2010; Clabots, 2012). Nurses who think family invite questions and communicate to:

• Ensure that consistent messages are delivered and understood. • Deliver a constant exchange of relevant and timely information. • Acknowledge the individual and family unit experience of health and illness.

Nurses who think family aim to build trusting individual-nurse-family partnerships. A caring nursing presence acknowledges family difficulties, advocates for members, and guides

CHAPTER 14 ● Family-Focused Nursing Actions 387

2910_Ch14_375-408 05/01/15 12:30 PM Page 387

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

supportive communication as members wrestle with time uncertainty, distress, and decisions (Agard & Maindal, 2009; Sveinbjarnardottir, Svavarsdottir, & Hrafnkelsson, 2012).

L istening and R esp onding to th e Family Story

Nurses need to be present, listen, and communicate with those seeking care for health and illness. Nurses can help break silences and use communication to guide decisions, learn new information, and resolve conflicts related tohealth and illness management (Segrin & Flora, 2011; Zhang & Siminoff, 2003). Effective family communication can be protective, support resilience, and decrease difficulties of managing illness (Black & Lobo, 2008). Constructive and purposeful communication is needed for collaborative individual-nurse-family relationships.

THERESA: “It seemed that health care providers wanted to act independently. They often seemed to have the belief that they did not need to include the family. We had care conferences and meetings when there was a crisis. It would have been so helpful to be more proactive and meet as a family with care providers. It would have been helpful to have a nurse who could help us talk and plan because they were the most consistent persons providing Michael’s care. They could have provided us with information and guided us in the dialogue and decisions.”

The nurse can use the core process of communication to help families develop, understand, and learn protective communication methods rather than criticism and conflict (Weihs et al, 2002). Interventions that promote direct communication, foster emotional expression, and assist a family to deal with loss and conflict can improve care outcomes (Chesla, 2010; Weihs et al, 2002). Nursing actions focused on communication and relationships have improved outcomes compared to usual care that may not focus on this process (Chesla, 2010).

THERESA: “At times it seemed that the providers wanted to put the burden on the family to say the words they don’t want to say. We were often left crying in the waiting room with no nurse present to listen or help my family talk to each other. We need a nurse to help share the burden and help us say the words.”

Families involved in the care and support of their family member with illness have improved recovery (Black, Boore, & Parahoo, 2011). The family’s perception of nurse support, collaboration, and respect is increased with good communication (Mitchell, Chaboyer, Burmeister, & Foster, 2009). When nurses invite family to participate in family member care, the flow of information and communication is easier, family members believe they receive greater support, and are more satisfied with care (Roberti & Fitzpatrick, 2010). Table 14.3 examines concerns that often emerge around communication.

Caregiving: Core Family Process

Children, adults, and the aged all have caregiving needs. The unique illness management tasks and caregiving skills are not always inherent in the family, but often need to be taught and learned. Some caregiving arises as family bonds generate strong attachments that encourage a milieu of protective watchfulness and attention to development, health and illness (Carr, 2014; Denham, 2003). As a core process, nurses can use caregiving to address wellness, health promotion, prevention, and care management for acute episodic, chronic, or debilitating con- ditions. Many families welcome adding children and assume caregiving tasks to guide healthy development into adulthood. Ideally, families socialize members to practice healthy behaviors and interact in ways that serve member, family, and societal needs. Wellness, health promotion, and disease prevention are closely tied to family health routines and caregiving. A family ex- periencing an acute illness or chronic condition often needs to acquire caregiving skills and knowledge (Hsiao & Van Riper, 2010; Li & Loke, 2013). An acute illness suggests needs for caregiving tasks (Boyoung, Fleischmann, Howie-Esquivel, Stotts & Dracup, 2011; Kamban

388 CHAPTER 14 ● Family-Focused Nursing Actions

2910_Ch14_375-408 05/01/15 12:30 PM Page 388

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 14 ● Family-Focused Nursing Actions 389

TABLE 14 -3 Potential A reas of Focus in Communication

NURSING ASSESSMENT FAMILY-FOCUSED NURSING ACTIONS EVALUATION

Identify the following: • Family communication

strengths • Disruptions in family

communication • Ability to engage in useful

communication that meets needs of individual and the family

• Whether communication supports individual and family unit needs

Use therapeutic questioning, such as: " Tell me about the ways your family has effectively solved problems in the past.”

“ In the past, when your family has faced troubles, what kinds of things worked best as you tried to resolve the problems? ”

Family members’ communication patterns help them solve problems, make decisions, and promote well- being of family unit members.

Communication is effectively used to identify meaningful goals and negotiate differences to achieve goals.

Promote family dialogue to continually exchange information, and convey emotions that protect and support family (LeGrow & Rossen, 2005; Nelms & Eggenberger, 2010).

Explore past family communication patterns and compare with current ones (Segrin & Flora, 2011).

Educate family members about the importance of communication and explain ways it can positively influence health and illness.

Coach family members in effective communication that fosters resiliency, using clarity, open emotional expressions, and collaborative problem solving (Black & Lobo, 2008).

Facilitate family negotiation to solve problems and resolve conflicts (Black & Lobo, 2008).

& Svavarsdottir, 2013). Chronic conditions require watchful attention, learning new skills, or modifying family health routines (Davis, Gilliss, Deshefy-Longhi, Chestnutt, & Molloy, 2011; McGhan, Loeb, Baney, & Penrod, 2013).

C aregiving in C h ronic Illness

Caregiving roles linked with chronic conditions are long-term requirements. More family caregivers are needed (Pierce & Lutz, 2013; University of Michigan Health System, 2006) to care for a growing portion of society:

• Growing numbers of adults over 65 years of age are living with multiple chronic illnesses. • Approximately 15% to 18% of children are now living with chronic conditions. • Over one-third of young adults already suffer from a chronic condition.

These statistics mean families need to take on roles as informal caregiving systems with regular responsibilities for assisting members. Caregiving demands can be needs for emo- tional support or actual assistance (Pierce & Lutz, 2013). New family roles might need to be learned, personal care services provided, concerns linked with employment resolved, care for an ill member provided, and other family household needs addressed (Pierce & Lutz, 2013; Siminoff et al, 2010). As health and illness transitions occur new caregiving roles are needed. Caregiving strain and burden are often related to the stress, struggles, and conflicted feelings about caregiving roles (Hunt, 2003). The strain and burden of prolonged caregiving can result in caregiver depression and increased mortality risk (Bastawrous, 2012; Perkins et al, 2013; Pierce & Lutz, 2013; Siminoff et al, 2010). Nurses who think family realize the core process of caregiving requires intentional thoughts and actions so nursing actions guide a family in planning and delivering caregiving.

2910_Ch14_375-408 05/01/15 12:30 PM Page 389

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

C ase Study Ap p lication: Family C aregiving E x p erience

The Zimanske family worked together. Theresa changed jobs so she could work near the school so Michael could continue attending. She became his transportation and closest care provider. As a family unit, they jointly cared for Michael and reached out to friends and support systems. Yet, they still needed support as caregivers. They wanted nurses to demonstrate understanding about the strains of caregiving experiences. The years of de- mands were not easy. The family needed nurses to recognize their stress and the burden of continuous caregiving demands and responsibilities.

THERESA: “I recall one situation where I had taken Michael to a clinic appointment. I had no time to shower, care for myself, and I was struggling. I needed support in my care- giving role. The next day a nurse called me to make a follow-up check. She asked, ‘And how are you doing? Yesterday I noticed that you were tired. This must be difficult for you.’ It was important for a nurse to check on me and follow up. I wanted nurses to try to walk in my shoes for just a moment. I appreciated that telephone follow-up and concerns for me as the caregiving mother.”

Nurses in all care settings can strengthen caregivers’ abilities as they provide necessary care for members. Family-focused nurses address caregiving, encourage and support family caring, and help them meet concerns that surface in caring for members (Couture, Ducharme, Lamontagne, 2012; Lubkin & Larsen, 2013). Nursing actions start with listening and observing. Regardless of the practice setting, thinking family implies focusing actions on development of caregiving capacities (Pierce & Lutz, 2013). Family-focused nurses empower, enable, equip, and prepare families. Boxes 14.3 and 14.4 highlight the contributions of faculty committed to developing the practice of nurses with families.

Family-focused nursing actions enable families to identify and mobilize strengths and resources to manage care situations, satisfy members’ needs, and sustain usual family life as much as possible (Cleek, Wofsy, Boyd-Franklin, Mundy, & Howell, 2012; Pierce & Lutz, 2013). Nursing actions to build confidence are often more effective than merely focusing on education; self-confidence in new caregiver skills is necessary (Couture et al, 2012). Ac- tions tailored and responsive to needs of family units produce the best care outcomes (Williams & Bakitas, 2012). Table 14.4 identifies the core process of caregiving and provides examples of assessment, nursing actions, and evaluation.

390 CHAPTER 14 ● Family-Focused Nursing Actions

BOX 14-3

Family Tree

Dorothy W hyte, BA, PhD, RN, RCN, HV, RNT (Scotland, United K ingdom)

Dorothy Whyte, BA, PhD, RN, RCN, HV, RNT, was enrolled in a doctoral program in the Department of Nursing Studies, Edinburgh University, Scotland, when she learned about the First International Family Nursing Conference scheduled in Calgary, Alberta, Canada, in 1988. Her attendance at this landmark conference greatly influenced her writing and thinking about families. Her doctoral research, completed in 1990, focused on chronic illness in children. In her subsequent role as a faculty member at Edinburgh University, she developed the first family nursing course. In 1997, she edited the book Ex plorations in Family Nursing. Through the use of case studies written by her students and colleagues, she demonstrated the relevance of family nursing in the United Kingdom. Dr. Whyte and her colleagues co-developed the Family Nursing Network Scotland [FNNS] in 1997. The aim of this network is to support clinical nursing, education, and research with families. Until her retirement from Edinburgh University in 1999, Dr. Whyte supervised and mentored master’s and doctoral family nursing students from the United Kingdom and other European countries. Her influence continues to be felt and acknowledged by these former students who are now providing significant leadership in family nursing in their countries.

2910_Ch14_375-408 05/01/15 12:30 PM Page 390

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 14 ● Family-Focused Nursing Actions 391

BOX 14-4

Family Tree

K az uk o Suz uk i, DSN, PHN, RN (Japan)

Dr. Suzuki has made the growth of family nursing in Japan a key priority and believes this has been her most important life work. Her foundational leadership at Chiba University and Tokai University was especially significant in the development of family nursing in Japan. Tokai University was the second university in Japan to offer master’s level preparation for clinical nurse specialists in family nursing. Dr. Suzuki taught family nursing for 5 years at Chiba University and for 11 years at Tokai University where she mentored a large number of clinical nurse specialists in family nursing. She continued this teaching focus at Tokai University until her retirement in 2008. In 1995, Dr. Suzuki coauthored (with Hiroko Watanabe) the first textbook in Japan on family nursing titled Family Nursing: Theory and Practice (Japan Nursing Association Publishing Company), which has now been published its fourth edition. She served as a board member of the Japanese Association for Research in Family Nursing (JARFN) from its beginning in 1994 and was the second president (2004–2007). In 2011, Dr. Suzuki was awarded an Innovative Contribution to Family Nursing Award from the J ournal of Family Nursing at the 10th International Family Nursing Conference in Kyoto, Japan.

TABLE 14 -4 Potential A reas of Focus in Caregiving

FAMILY ASSESSMENT FAMILY-FOCUSED NURSING ACTIONS EVALUATION

Health maintenance and disease prevention

Available family resources and networks

Difficulties adjusting to caregiving trajectories such as:

• Assuming the caregiving role

• Seeking formal care assistance

• Leaving the role

Caregiver stress, strain and burden

Assess using caregiver burden and strain measures

(Rodakowski, Skidmore, Rogers, & Schulz, 2012).

Shifting family roles

Family promotes emotional and physical health for all members.

Family has maximized use of available resources for health of all members.

Family is confident and empowered with caregiving roles and transitions (Pierce & Lutz, 2013).

Family accesses resources and recognizes strengths and limitations as caregivers.

Family adjusts to changes in family roles and coordinates changes.

Educate about health maintenance and teach illness prevention.

Identify and mobilize family strengths. Consider cultural differences and

expectations linked with caregiving tasks.

Explore resources of family and community.

Discuss with family the potential ways to access networks.

Provide information in a variety of forms. Build family caregiver confidence (Pierce

& Lutz, 2013). Support family presence and vigilance as

appropriate (Carr & Clarke, 1997).

Help caregiver gain access to services. Obtain respite care. Arrange phone conference with family

members and health care providers. Provide access to Internet chats. Provide caregiving Web sites.

Explore past, current, and changing family roles with caregiving.

2910_Ch14_375-408 05/01/15 12:30 PM Page 391

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Celebration: Core Family Process

Almost everyone loves a celebration, but it is not usually the first thing on nurses’ minds when they think of health or illness. The core process of celebration points to unifying family events with positively shared family meanings to commemorate (Denham, 2003). Celebrations, traditions, and rituals are tied to belonging, and they contribute to family identity and integrity (Denham, 2003). Family rituals often include celebrations that can generate family healing as members connect, empower one another, and decrease stresses of daily life and illness (Moriarty & Wagner, 2004). Children’s birthday cele- brations are an example of family rituals that are often repeated multiple times through- out the evolving family’s life and have potential to contribute to family well-being and family connections (Lee, Katras, & Bauer, 2009). A ritual such as a birthday celebration may be unique among families. Families tend to view celebrations positively and when an event is not celebrated as usual stress or even grief might occur. Family ritual as a shared time to promote close relationships is a prominent aspect of resilient families (Black & Lobo, 2008; Walsh, 2003). Nurses who think family know some celebrations are valued and take note of special times and facilitate and encourage the family’s observance of those special events.

C ase Study Ap p lication: C elebration

Nurses do not always think about family celebrations in nursing roles. Yet, a family’s times of sharing together are valued and provide a reprieve from life’s struggles. Taking time away from stressful needs can help preserve family resiliency. Nurses can encourage families to share stories about past celebrations and describe the value or meanings of events and their cultural and religious significance.

THERESA: “At 10 years old, Michael’s favorite holiday was Halloween. He was hos- pitalized on Halloween and stressed about not being able to go to school. Even though he was isolated, nurses figured out a way that kids from his class could connect with him to celebrate the holiday. School friends came in their costumes. The nurses even came in costumes and they helped him dress up for Halloween. This meant a great deal to Michael and our family.”

Nurses can assist families to find ways to continue celebrations despite barriers. Families can benefit from community resources such as the mission of the Make-A-Wish Foundation to create celebratory events that enrich the lives of children who have life-threatening medical conditions. Children with diabetes may be able to attend a diabetes camp and gain confidence, knowledge, and skills as they join with other children at camp events. Nurses can use actions to help families construct new celebrations or modify old ones in response to an illness or other life transition (Denham, 2003).

Change: Core Family Process

Change is a constant element of family life with ongoing alterations in the family social systems and larger environments (Denham, 2003; Wright & Leahey, 2013). Change, as a core process, can be defined as the dynamic family process that requires alteration or modification, redirection of attentions or resources, or substitutions (Denham, 2003). Needs for change come in unexpected and unpredictable forms that can be demanding to the family. Developmental changes occur throughout life as family members grow and develop, but when an unknown situation or uncertainty surfaces, preparation for change can be limited. Life events such as death, war, unemployment, or serious illness in one family member can initiate changes affecting the family unit (Wright & Leahey, 2013).

392 CHAPTER 14 ● Family-Focused Nursing Actions

2910_Ch14_375-408 05/01/15 12:30 PM Page 392

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Individual changes due to health or illness often require changes in others and precipitate significant transitional needs (Meleis, 2010). Nurses who think family assist members as they face, manage, and engineer the uneasy stressors that accompany change. Individ- ual-nurse-family relationships can assist family units by sorting out the implications of abrupt alterations, teaching new things, coaching in lifestyle changes, or counseling about options and choices.

Health behavior changes in a family often are a key to prevention and management of illness (Shumaker, Ockene, & Riekert, 2009). For example, tobacco use, unhealthy diets, and physical inactivity play roles in causation and progression of chronic disease (United States Department of Health and Human Services, 2012). Objectives to increase life quality and not just years of life aim to eliminate health disparities and improve lifestyle behaviors (United States Department of Health and Human Services, 2012). Nurses have a responsibility to help create a context for some anticipated changes (Wright & Bell, 2009; Wright & Leahey, 2013). Family units exist within a social system and physical environment linked to change, some of which cannot be controlled by them (Denham, 2003). Thus, nursing actions can assist family members in attending to house- hold concerns as adjustments to change are needed.

Nurses use teaching, coaching, and collaboration to facilitate changes that support health and illness (Hamric, Hanson, Tracy, & O’Grady, 2014; Wright & Leahey, 2013). Providing and exchanging useful information is a critical first step in addressing change. Families often need someone to listen as they face changes. They need to be guided to solve problems or adopt new routines. Nurses can support health-promoting changes through actions that build confidence and empower (Pierce & Lutz, 2013). Empowering provides information, skills, and resources to manage circumstances and needed changes (Hulme, 1999; Pierce & Lutz, 2013).

Managing change requires skill to navigate through conflicts and resistance and emerge with successful outcomes (Mason & Butler, 2010). This is not easy for families or nurses. It takes time, practice, and support when failure occurs. Motivational interviewing is useful in identifying and altering behaviors (Mason & Butler, 2010; Rollnick, Miller, & Butler, 2008) through several actions:

• Ask questions, be curious. • Listen and understand the family’s desires for change. • Guide the family by suggesting options. • Plan and take actions aligned with family values. • Create confidence and empower the family.

Nurses need to understand and be sensitive to family concerns linked with change. Education and interventions linked with emotions and relationships need attention.

C ase Study Ap p lication: C h ange

Change can occur quickly or over time; it is not usually a particular one-time event (Mason & Butler, 2010). Stages of change—precontemplation, contemplation, preparation, action, maintenance, and termination—are viewed as places where people are as they confront needs for change (Prochaska, Johnson, & Lee, 2009). Precontemplation refers to the time when the individual is not intending to change; contemplation is when the person intends to change in the next 6 months. Preparation is when action is expected in the immediate future and action includes modifications. Maintenance is when an individual is likely to continue the change. Termination of the change process occurs when the person will not return to unhealthy ways.

Nurses can help families identify the stage at which members are in readiness to change. Different nursing actions are needed at each stage. The first critical step is assessing where

CHAPTER 14 ● Family-Focused Nursing Actions 393

2910_Ch14_375-408 05/01/15 12:30 PM Page 393

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

individuals and families are in the change process. Most people need to know the benefits of change and the risks associated with not changing. Nurses can provide positive supports re- gardless of where persons are in readiness to change. Nurses who think family recognize that nursing actions to address change depend upon readiness to change and other family factors.

Inviting change through therapeutic communication is central to family nursing practice (Wright & Bell, 2009). Respecting beliefs and managing constraining beliefs sets the stage for nursing actions and supports (Wright & Bell, 2009). Family members need skills to solve problems and resolve difficult situations.

THERESA: “Michael’s illness kept changing. It would have been helpful to know what change may be next. Every family is different. Our family needed help to redesign our vision of family life. It’s an evolution and process that takes repeated conversations. Our family was often in disbelief about what was happening around us. Our emotions, visions, and dreams had not caught up with the changes. We needed guidance in how to deal with the countless changes in Michael, our family, and each of our own lives.”

G oals

When change is needed, the individual-nurse-family relationship provides ways to collaborate and partner as goals are set and strategies developed. Nurses assist families by asking ques- tions and then working with them to set specific goals tied to a needed change and develop strategies or actions to accomplish that change. The actions should be measurable.

• Who—Who in the family do we need to involve? • What—What needs to be accomplished by the individuals or the family unit? Does

the nursing action fit this family? • When—By what time/date can the family accomplish this? • Where—Where does this need to be addressed? Is it something to do at home, school,

or work? • Which—Which barriers, constraints and resources need to be addressed by the

family? • Why—Why is this change necessary? What are the benefits if the family meets the

goal? What are the risks if they fail to meet goal? • How—How does the family view this change? How do individual family members

influence this change?

A goal has specific criteria to measure progress. Focusing on whether a goal is attainable assists the nurse and family to realistically consider capacity to attain it. What are the mem- ber attitudes, abilities, skills, and family resource factors? Goals are set to be accomplished and measured within a particular timeframe. What barriers need to be overcome? What resources are needed? Goal achievement requires nursing actions that fit family needs (Wright & Leahey, 2013). Family beliefs, values, roles, member processes, and culture need to be considered (Bulecheck & McCloskey, 1992). Family nurses respect unique beliefs and partner to attain optimal health outcomes as changes are managed (Table 14.5).

Connection: Core Family Process

Connection, another core process, refers to bonds and links among family members, the family as a system, and systems external to the family household. Connections occur among relational bonds, commitments, and resources. Connections may be simple, as in a shared music interest or a biological relationship to a grandparent. Connections can also be complex, as in the network of multiple members in a blended family and various resources linked to the family system or particular members (Fig. 14.5). For example, a

394 CHAPTER 14 ● Family-Focused Nursing Actions

2910_Ch14_375-408 05/01/15 12:30 PM Page 394

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

child from an earlier relationship might be covered under a different health insurance plan from other family members. Connection sometimes varies among members in a single household. Connections within a family can be strengthened or weakened over time. Boundaries between family systems and ecological environments influence some family connections. For instance, if family members believe they should be self-sufficient in man- aging problems, they may be reluctant to seek help from outsiders. This could limit their access to available resources. On the other hand, a family with open boundaries might pursue every resource possible.

CHAPTER 14 ● Family-Focused Nursing Actions 395

TABLE 14 -5 Potential A reas of Focus in Ch ange

ASSESSMENT FAMILY-FOCUSED NURSING ACTIONS EVALUATION

Engage in a family conversation that encourages family members to tell their story and invites reflection on beliefs about health and illness

(Wright & Bell, 2009). Assess context of

the family that influences health (e.g., cultural influences, social environment)

(Schneider & Stokols, 2009).

Family sets goals. Family engages in

planned strategies that facilitate meeting goals.

Changes are made and goals are accomplished.

Create collaborative relationship with family. Explore illness beliefs, strengthen facilitative

beliefs, challenge constraining beliefs (Wright & Bell, 2009).

Listen and understand family’s reason for making or not making changes.

Increase family awareness of need for change. Identify supports for change. Set goals and identify strategies for making the

change. Establish a timetable for making changes.

FIGURE 14 -5 Family connections.

2910_Ch14_375-408 05/01/15 12:30 PM Page 395

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

In the Family Health Model (Denham, 2003), connections are described as ways in- dividuals are committed to and linked through interests, values, roles, and identities. Social ties are potential resources linked to positive health outcomes (Giordano, Bjork, & Lindström, 2012; Looman, 2006). For example, neighborhood characteristics such as attachment and informal social control are linked with mothers' parenting mastery (Carpiano & Kimbro, 2012). Living in a neighborhood where social connections are strong may help families access supportive networks and needed resources.

A study of Swedish families indicated that high degrees of family, school, and neighbor- hood connectedness facilitated higher levels of child well-being (Eriksson, Hochwolder, Carlsund, & Sellström, 2012). Connectedness was measured using responses to such cues as “You can trust people around here” and “People say ‘hello’ and often stop to talk to each other on the street” (Eriksson et al, 2012). Trusting attitudes and friendly neighbors affect individual and family health. If trust and social connections are interconnected, stronger social networks help families use relationships to access resources (Giordano et al, 2012). Table 14.6 provides direction for assessment, nursing actions, and evaluations linked with connection.

C ase Study Ap p lication: G enograms and E comap s Provide C onnections

Connections can be health promoting. Nurses can use knowledge about community resources to help families access resources. Tools discussed earlier in the book, such as genograms and ecomaps, can be used to assess family connections. Genograms provide a picture of the family and related health risks. An ecomap is a snapshot of social relationships that can help identify potential resources (Rempel, Neufeld, & Kushner, 2007; Wright & Leahey, 2013).

396 CHAPTER 14 ● Family-Focused Nursing Actions

TABLE 14 -6 Potential A reas of Focus in Connection

NURSING ASSESSMENT FAMILY-FOCUSED NURSING ACTIONS EVALUATION

Create and discuss a family genogram with members of the family.

Create and discuss the family’s ecomap

Family members share perceptions about the family structure, roles, and connections within and across generations.

Goals and a plan of action are generated.

Family members identify existing resources and potential connections to needed resources for support that promotes health and manages illness.

Goals and a plans of action are generated.

Ask family members to share in the process of creating the genogram.

Identify actual and potential sources of support from extended family members.

Identify any barriers or threats that need attention.

Engage the family in a discussion of ways family members facilitate or create barriers to connections within and outside the family.

Identify sources of support, through social network connections and links to supportive resources over time.

Identify any barriers or threats that need attention.

Discuss existing connections as potential, but untapped resources.

Explore shared perceptions and meanings about connections.

Identify supports outside the family boundaries.

2910_Ch14_375-408 05/01/15 12:30 PM Page 396

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Used interactively, the genogram, a graphic representations of information about family, usually over at least three generations, can aid thinking about family as a system connected to the larger world (McGoldrick, Gerson, & Petry, 2008). The genogram can identify ways members are connected legally, emotionally, socially, and genetically. Discussions can lead to learning about member roles and values. This is a nonthreatening way to ask questions about member connections or relationships and identify ways members interact with one another (McGoldrick et al, 2008). A completed genogram offers a tangible map of the fam- ily story. It may reveal connections to resources that may not have been recalled before the exercise.

Creating an ecomap, a graphic representation of social networks and bonds within them, can generate dialogue as information about key sources of support is gathered (Hartman, 1995). Sources include kin, friends, support groups, schools, religious affiliations, employers, and professionals (Rempel et al, 2007). The ecomap can be used to discuss strengths and directions of relationships. The ecomap creation may reveal strong or weaker connections and help discern boundaries that exist between members and systems external to the family household.

Creating a genogram and ecomap with the Zimanske family provided nurses with broader historical data and information about social contexts. For example, extended family members played important roles in the Zimanske family’s life. Theresa had a large number of siblings and several living nearby in a rural farming area and they were instru- mental supports and willing to stay with Michael or offer assistance as needed, including emotional supports. Faith-based activities played important roles in the family’s social and spiritual lives. Their church affiliation linked them to caring congregants over many years. Their faith connected them to a higher power to trust and seek spiritual guidance during the long illness. Nurses knew the information on the Zimanske family genogram and ecomap. “We became human . . . we began connecting as human beings rather than as doctor-patient,” explained Teresa. Theresa believed that these tools helped nurses provide their family more effective care.

Coordination: Core Family Process

Coordination, as a core process, refers to cooperative sharing of resources, skills, abilities, and information within and outside the family. There are several purposes of coordination:

• Use time and other resources wisely. • Optimize efforts to achieve individual and family health. • Achieve individual and family goals.

Coordination involves decisions about daily activities, routines, networking with support systems, and negotiating a satisfactory balance between available resources and needs of individuals and the family unit. Coordination is important to the promotion of care maintenance for wellness, prevention, illness, disease, or disability.

Family coordination includes participation, organization, focalization, and affective contact (Fivaz-Depeursinge & Corboz-Warnery, 1999; Lavadera, 2011). These factors address the following:

• Participation is the ability of family members to interact and not exclude certain members in shared activities.

• Organization is clear communication that honors members’ roles in a family activity. It is what helps a family complete needed tasks.

• Focalization is the ability to focus attentions as activities are carried out. • Affective contact pertains to members encouraging and appreciating everyone’s

contribution and promoting fun and harmony during activities.

CHAPTER 14 ● Family-Focused Nursing Actions 397

2910_Ch14_375-408 05/01/15 12:30 PM Page 397

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Coordination involves members’ unique processes, communicating, respecting roles, paying attention to goals, and recognition of member contributions.

Coordination entails cooperative sharing of resources, skills, abilities, and information within the family and exchanges with larger contextual systems (Denham, 2003). Working together and sharing resources can optimize health potentials and goal accomplishment. Effective coordination is often a silent and unrecognized family strength because it occurs without overt negotiation or discussion (Denham, 2003). Lack of family cooperation is a problem when activities and behaviors are not effective in meeting goals, lead to disputes or stress, and are unaddressed. For example, schedules may be disrupted when a parent is hospitalized because of an automobile accident. This interferes with usual coordination of meal preparation, child care, or transportation. This disruption may manifest itself as a crisis of time management for others and lead to unexpected stress. A teenager may be asked to assume a role of child care and rebel when it interferes with plans. Nurses who think family assess family routines and identify disruptions. What coordination needs to occur to help this family organize? Table 14.7 identifies some areas for assessment, nursing actions, and areas to evaluate in the coordination process.

C ase Study Ap p lication: C oordination

Coordination assists family members by enabling them to work in unity and share re- sources, skills, abilities, and information. Begin with assessment of the family’s collective awareness of needs and resources linked to a specific situation. Do family members agree or disagree on the problem and what is needed? An acutely ill father is being discharged after a lengthy hospitalization. Do the spouse, teen children, and extended family agree about the family’s most pressing needs? The coordination process suggests nursing actions that assist the family unit in the following:

• Recognize and include needs of all members. • Communicate and respect roles. • Attend to family unit stress, concerns, and frustrations. • Appreciate the contributions of each member. • Identify available resources, shared goals. • Include all in shared decision making.

In the Zimanske family, Michael had many lengthy hospitalizations, including one in which he received a kidney transplant from a family member. Coordination as a core family process required each family member to recognize and include others in the preparation for discharge after transplant. Although not all members were physically present when Michael was discharged, the process considered the concerns of various member needs during the recuperation phase, such as Jessica’s social needs and Theresa and Don’s work schedules, so there would always be a caregiver present. It also included the needs of Michael’s aunt, the kidney donor, who would be simultaneously recovering at a different home. Nurses who think family recognize that coordination involves support, roles, relationships, resources, threats, and balanced attention to individual and family needs in addition to the skills and information needed to ensure safe physical care.

Coordination as a family process is important for health promotion and during times of stress. In a study of healthy dual-income families, findings indicated “busy families lead lives where more than half of all activities unfold as non-routine,” and “family members do not have perfect knowledge of each other’s routines (Davidoff, Zimmerman, & Dey, 2010, p 2469). The families studied were not ill, but were leading

398 CHAPTER 14 ● Family-Focused Nursing Actions

2910_Ch14_375-408 05/01/15 12:30 PM Page 398

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

typical lives as a busy family. Theresa described her family’s experience during this transplant as “stress times a million.” Stability of routines is important in family lives and the adaptation of new behaviors can be stressful (Denham, 2003). Stressful events require families to negotiate unfamiliar situations and coordinate or share in needed changes. Box 14.5 provides a case to explore family processes and family-focused nursing actions.

CHAPTER 14 ● Family-Focused Nursing Actions 399

TABLE 14 -7 Potential A reas of Focus in Coordination

NURSING ASSESSMENT FAMILY-FOCUSED NURSING ACTIONS EVALUATION

Identification and collective awareness of needs

Identification and collective awareness of resources

Identification of family goals

Cooperation

Decision making

Family members have a shared understanding of individual and collective family unit needs.

The family names one or more current needs that were previously implied.

Family members identify a set of resources available to satisfy identified needs.

Families identify and call upon existing strengths as resources.

Family members have a shared understanding of goals to achieve.

Resources are coordinated to meet identified needs.

Family members are willing to “ give and take” and share.

Family is adapting as needed to manage changing needs for support and resources.

Family members prioritize needs, act on decisions, resolve problems, and meet individual and family unit needs.

Encourage family members to verbalize perceived needs.

Offer guidance in naming needs family member express that might be implied, but not spoken.

Facilitate identification and “ cataloging” of available resources, skills, abilities, and information.

Commend families and individuals when resources, skills, and abilities are apparent.

Assist the family to identify goals for health or illness management and move toward consensus.

Offer guidance in negotiations. Assist family to coordinate resources to

meet member and family unit needs.

Facilitate decision making by listening. Reflect on problem identification that

needs resolution. Prioritize needs.

2910_Ch14_375-408 05/01/15 12:30 PM Page 399

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

400 CHAPTER 14 ● Family-Focused Nursing Actions

BOX 14-5

Family Circle

Maria Sanchez is a 78-year-old woman who has lived alone in a small rural community in the Midwest. Maria’s husband is deceased and her three adult children live on the east and west coasts. Maria has been independent since her husband’s death 10 years ago, but recently her eldest son James has noticed she seems forgetful when he calls. He decides to fly home for a visit. When he arrives, he notices that she keeps leaving the stove on and seems unable to safely drive to get groceries. She says she has not been feeling good and has little appetite. A few days later, Maria becomes seriously ill. James takes her to the hospital and she is admitted with pneumonia. She is eating little and has a temperature of 101° F. Maria asks the nurses if she is going to get to return home soon. She is on intravenous antibiotics, but is not improving. James contacts his sister, and the nurse caring for Maria in the room hears their conversation as she cares for the other person in the room. James tells his sister that she is going to have to come be with their mother. He tells her that he has to return to his business. His sister Sarah says she has no one to watch the children and cannot leave them. The nurse hears James say they that it would be useless to call their brother Peter because he can hardly take care of himself.

General Q uestions:

● What is the nurse’s responsibility in taking care of Maria Sanchez? ● What concerns will the nurse have for Maria’s discharge? ● What do you think the nurse might do after she hears this conversation?

Family-Focused Q uestions:

● What family nursing actions might the nurse consider for this family? ● Using family-focused actions, what core family processes might be concerns in this situation? ● Consider the opportunities that family-focused nursing actions might create compared to

individual-focused actions.

Core Processes and Family Meetings

Family nursing places families at the center of nursing actions. A nurse-led family meeting is a specific nursing action that includes the family unit and provides opportunities to hear and address needs and concerns. Core processes are part of a toolbox of ideas to approach nursing care for families. Family meetings can be used to communicate with the family, make decisions, or identify strategies to resolve pending problems. Most families value time to meet with a nurse who will guide, mentor, and inform them about illness management, care treatments, and behavior changes (Hamric et al., 2014 McDaniel et al., 2005). Nurses may need to initiate these meetings because many families have not had a previous experi- ence with them and, therefore, would not request them.

Family meetings are a time when nurses can directly target family processes, member concerns, and support needs. Bringing a family together has healing potential and can ease family suffering and distress (Legrow & Rossen, 2005; Wiegand, 2006; Wright & Leahey, 2013). The therapeutic nature of a family meeting allows questions, exploration of family beliefs, and relationship building (Nelms & Eggenberger, 2010). These meetings have the potential to decrease frustrating confrontation, misunderstandings, and family dissatisfaction (Nelms & Eggenberger, 2010; Hannon, O’Reilly, Bennett, Breen, & Lawlor, 2012). Table 14.8 describes purposes, strategies, and potential outcomes of family meet- ings. These meetings need to be inclusive and welcome all interested members. Dialogue to support understanding is encouraged, directions are identified, and guidance offered to improve care outcomes. Family meetings facilitate family processes and communication with the health care team (Box 14.6).

2910_Ch14_375-408 05/01/15 12:30 PM Page 400

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 14 ● Family-Focused Nursing Actions 401

TABLE 14 -8 Purpose, Strategy , and O utcomes of Family Meetings

STRATEGIES FOR FAMILY-FOCUSED PURPOSE NURSING ACTIONS OUTCOMES

Share and exchange information.

Encourage healthy patterns of communication.

Identify family beliefs that influence health.

Facilitate understandings of individual family members’ thinking.

Informed family with increased trust.

Open, honest, respectful family communication during stress of illness experience.

Respectful understandings of differences and consensus among family members (Wiegand, 2006).

Move toward facilitating beliefs.

Family members acknowledge the needs and concerns of other members.

Provide consistent communication with family and interprofessional team.

Create a comfortable and welcoming atmosphere.

Model communication facilitative techniques to family members.

Help individuals to share ideas. Respect beliefs; avoid stereotypes and

assumptions.

Clarify individual and family unit beliefs. Identify facilitating and constraining beliefs

(Wright & Bell, 2009).

Direct attention to individuals during the meeting.

Strive for consensus. Use negotiation as a tactic for resolving

conflicts.

BOX 14-6

Research Evidence Ab out Family Meetings

Selected research findings about the benefits of family meetings:

Arranging family participation in the nursing home setting is a way to improve the well-being of the older adult resident while maintaining the family’s ongoing participation in the care of their loved ones (Dijkstra, 2007).

Including family caregivers of clients living with cancer in psychoeducational interventions has been found to alleviate caregiver distress (Doorenbos et al, 2007).

Involving parents of children with diabetes in interventions increases parents’ knowledge and supports coping with the illness (Chesla, 2010).

Developing skills through interventions that improve family relations while managing a chronic illness demonstrates improved outcomes, such as a decrease in family members' anxiety, depression, and sense of illness burden, when compared to usual care (Chesla, 2010).

Providing quality end-of-life care in hospital settings requires the involvement of family, and family conferences are a way to facilitate decision making with end-of-life issues (Fineberg, Kawashima, & Asch, 2011; Wiegand, 2006).

Participating in family meetings that aim to attend to spiritual and psychosocial needs can be a potentially useful intervention according to patients, family members, and staff in a palliative care setting; however, strategies to overcome implementation barriers are needed (Tan et al., 2011).

Facilitating family meetings at predetermined scheduled times in the acute care setting can minimize the uncertainty and distress of the family experience (LeGrow & Rossen, 2005; Nelms & Eggenberger, 2010).

Arranging conferences with families in primary care settings provides the best outcomes for patient and moves the family and provider toward common understandings (McDaniel et al., 2005).

2910_Ch14_375-408 05/01/15 12:30 PM Page 401

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

402 CHAPTER 14 ● Family-Focused Nursing Actions

BOX 14-7

Successful Communication Through Family Meetings

Before conducting a family meeting, the nurse can use the following steps to address the needs of those taking part:

● Consider the purpose and what needs to be accomplished through the family meeting. ● Identify and invite all family members who need to be present; consider privacy needs as

members are included. ● Provide quiet environment with room for family members. ● Arrange a time that is convenient for the majority of family members. ● Identify the health care team members who need to be present. ● Provide ample time for opportunity to listen to family members. ● Plan for the need to begin, maintain, and terminate the meeting with appropriate statements

and actions.

Case Study Application: Family Meetings

Conducting family meetings requires careful planning and implementation. Nurses often rely on someone like the chaplain, social worker, or physician to lead these meetings and manage family dynamics. Although others might participate in a family meeting, it is often the nurse who has the greater understanding of the family needs and works with them most closely. Nurses familiar with family situations and who have some relation- ship with the family are likely the best ones to lead family meetings. As the meeting be- gins, identify the purpose of the meeting and goals to address. Set a time limit so the family will know how long you will be available. Do not overestimate what might be accomplished, but recognize that even brief conversations with a family can have a pos- itive influence on the family (Halldórsdóttir & Svavarsdóttir, 2012; Svavarsdottir & Sigurdardottir, 2013) and family meetings can be beneficial to patients and families (Tan, Wilson, Olver, & Barton, 2011).

THERESA: “I asked for family meetings, but they only occurred when we had a crisis event. It would have been helpful to be more proactive. The registered nurses would have been great conveners of family meetings because they knew Michael and us so well. Family meetings could have helped us think, talk and share our concerns.”

Nurses can use family meetings to:

• Listen and understand the family experience. • Integrate their knowledge or expertise linked to illness and treatments with the

family’s experiential expertise of the individual who is ill and each other. • Identify the emotional issues or care barriers and facilitate action plans.

Box 14.7 describes some strategies to use for successful family meetings.

2910_Ch14_375-408 05/01/15 12:30 PM Page 402

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Chapter Summary

Family-focused nurses intentionally place the family unit in the center of practice and treat them as the unit of care. The core processes from the Family Health Model (Denham, 2003) provide guides for nurses’ actions with families. Core processes of communication, caregiving, cathexis, celebration, change, connectedness, and coordination are guides for intentional nursing actions. Therapeutic conversations and family meetings bring nurses and families together so they can collaborate through individual-nurse-family partnerships to satisfy unique needs,, consider choices of action, resolve problems, and make decisions. Nurses who think family recognize family processes are central to family life and require nursing actions that recognize areas of concern and strength.

REFERENCES

Abate, F. R. (Ed.). (2002). Oxford American dictionary of current English. New York: Oxford University Press.

Agard, S. S., & Maindal, H. T. (2009). Interacting with relatives in intensive care units: Nurses’ perceptions of a challenging task. Nursing in Critical Care, 14(5), 264–272.

Almasri, N. A., Palisano, R. J., Dunst, C. J., Chiarello, L. A., O’Neil, M. E., & Polansky, M. (2011). Determinants of needs of families of children and youth with cerebral palsy. Children’s Health Care, 40(2), 130–154.

American Nurses Association (ANA). (2001). Code of ethics for nurses with interpretative statements. Silver Spring, MD: Author.

Anderson, K. A., & Tomlinson, P. S. (1992). The family health system as an emerging paradigmatic view for nursing. Image: Journal of Nursing Scholarship, 24, 57–63.

Bastawrous, M. (2012). Caregiver burden—A critical discussion. International Journal of Nursing Studies, 49(11), 431–441.

Benzies, K., & Mychasiuk, R. (2009). Fostering family resiliency: A review of the key protective factors. Child and Family Social Work, 14, 103–114.

Bettle, A. M. E., & Latimer, M. (2009). Maternal coping and adaptation: A case study examination of chronic sorrow in caring for an adolescent with a progressive neurodegenerative disease. Canadian Journal of Neuroscience Nursing, 31(4), 15–21.

Black, K., & Lobo. M. J. (2008). A conceptual review of family resilience factors. Journal of Family Nursing, 14(10), 33–55.

Black, P., Boore, J. R. P., & Parahoo, K. (2011). The effect of nurse-faciliated family participation in the psychological care of the critically ill patient. Journal of Advanced Nursing, 67(5), 1091–1101. doi:10.1111/j.1365-2648.2010.05558.x

Boss, P. G. (2006). Loss, trauma, and resilience: Therapeutic work with ambiguous loss. New York: Norton.

Boss, P. G., Doherty, W. J., LaRossa, W. R, Schumm, W. R., & Steinmetz , S. K. (Eds.). (1993). Source- book of family theories and methods: A contextual approach (pp 651–672). New York: Plenum.

Boyoung, H., Fleischmann, K. E., Howie-Esquivel, J., Stotts, N. A., & Dracup, K. (2011). Caregiving for patients with heart failure: Impact on patients’ families. American Journal of Critical Care, 20(6), 431–442. doi:10.4037/ajcc2011472

Bulecheck, G. M., & McCloskey, J. (1992). Nursing interventions: Essential nursing treatments (2nd ed.). Philadelphia: W. B. Saunders.

Burke M. L., Eakes, G. G., & Hainsworth, M. A. (1999). Milestones of chronic sorrow: Perspective of chronically ill and bereaved persons and family caregivers. Journal of Family Nursing, 5, 374–387.

Carpiano, R. M., & Kimbro, R. T. (2012). Neighborhood social capital, parenting strain, and per- sonal mastery among female primary caregivers of children. Journal of Health and Social Behavior, 53(2), 232–247. doi:10.1177/0022146512445899

CHAPTER 14 ● Family-Focused Nursing Actions 403

2910_Ch14_375-408 05/01/15 12:30 PM Page 403

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Carr, J. M. (2014). A middle range theory of family vigilance. MEDSURG Nursing, 23(4), 251–255. Carr, J. M., & Clarke P. (1997). Development of the concept of family vigilance. Western Journal of

Nursing Research, 19(6), 726–739. Chesla, C. (2010). Do family interventions improve health? Journal of Family Nursing, 16(4),

355–377. doi:10.1177/1074840710383145 Clabots, S. (2012). Strategies to help initiate and maintain the end-of-life discussion with patients

and family members. MedSurg Nursing, 21(4), 197–203. Cleek, E. N., Wofsy, M., Boyd-Franklin, N., Mundy, B., & Howell, T. J. (2012). The family empow-

erment program: An interdisciplinary approach to working with multi-stressed urban families. Family Process, 51(2), 207–217. doi:10.1111/j.1545-5300.2012.01392.x

Chinn, P. (2008). The discipline of nursing. Advances in Nursing Science, 31(1), 1. Couture, M., Ducharme, F., & Lamontagne, J. (2012). The role of health care professionals in the

decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Management & Practice, 24, 283–291.

Dahnke, M. D., & Dreher, H. M., (2011). Philosophy of science for nursing practice: Concepts and application. New York: Springer.

Davidoff, S., Zimmerman, J., & Dey, A. K. (2010). How routine learners can support family coor- dination. Paper presented at the Proceedings of the 28th International Conference on Human Factors in Computing Systems, pp 2461–2470.

Davidson, M. R., London, M. O., & Ladewig, P. A. (2012). Olds’ maternal-newborn nursing and women’s health across the lifespan (9th ed.). Upper Saddle River, NJ: Pearson Prentice Hall.

Davis, L. L, Gilliss, C. L., Deshefy-Longhi, T., Chestnutt, D. H., & Molloy, M. (2011). The nature and scope of stressful spousal caregiving relationships. Journal of Family Nursing, 17(2), 224–240.

Denham, S. (2003). Family health: A framework for nursing. (2003). Philadelphia: F. A. Davis. Dijkstra, A. (2007). Family participation in care plan meetings: Promoting a collaborative organiza-

tional culture in nursing homes. Journal of Gerontological Nursing, 4, 22–31. Doorenbos, A. Z., Given, B., Given, C. W., Wyatt, G., Gift, A., Rahbar, M., & Jeon, S. (2007).

The influence of end-of-life cancer care on caregivers. Research in Nursing and Health, 30(3), 270–281.

Doran, G. T. (1981). There’s a S. M. A. R. T. way to write management goals and objectives. Man- agement Review (AMA Forum), 70(11), 35–36.

Duhamel, F. (2010). Implementing family nursing: How do we translate knowledge into clinical practice? Part II: The evolution of 20 years of teaching, research, and practice to a center of excellence in family nursing. Journal of Family Nursing, 16(10), 8–25.

Eakes, G. (1993). Chronic sorrow: A response to living with cancer. Oncology Nursing Forum, 20, 1327–1334.

Eakes, G., Burke, M. L., & Hainsworth, M. A. (1998). Middle-range theory of chronic sorrow. Image: Journal of Nursing Scholarship 30, 179–184.

Eggenberger, S. (2011, June 25). Psychometric testing of the family nurse presence (FNP) instrument among family members in critical care: Making visible the importance of understanding, connect- ing, including, and listening for nurses. Presentation at the 10th International Family Nursing Conference. Kyoto, Japan.

Eggenberger, S. (2012). The science of nursing actions. Presentation at Minnesota State University, Mankato School of Nursing.

Eggenberger, S. K., Meiers, S. J., Krumwiede, N. K., Bliesmer, M., & Earle, P. (2011). Family reinte- gration: A family health promoting process in chronic illness. Journal of Nursing and Health Care of Chronic Illness, 3, 283–292.

Eggenberger, S. K., & Nelms, T. (2007). Being family: The family experience when an adult member is hospitalized with a critical illness. Journal of Clinical Nursing, 16, 1618–1628.

Eriksson, U., Hochwolder, J., Carlsund, A., & Sellström, E. (2012). Health outcomes among Swedish children: The role of social capital in the family, school and neighbourhood. Acta Paediatrica, 101(5), 513–517. doi:10.1111/j.1651-2227.2011.02579.x

Fineberg, I. C., Kawashima, M., & Asch, S. M. (2011). Communication with families facing life- threatening illness: A research-based model for family conferences. Journal of Palliative Medicine, 14(4), 421–427. doi:http://dx.doi.org/10.1089/jpm.2010.0436

404 CHAPTER 14 ● Family-Focused Nursing Actions

2910_Ch14_375-408 05/01/15 12:30 PM Page 404

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Fivaz-Depeursinge, E., & Corboz-Warnery, A. (1999). The primary triangle: A developmental systems view of fathers, mothers, and infants. New York: Basic Books.

Garwick, A. W., Detzer, D., & Boss, P. A. (1994). Family perceptions of living with Alzheimer’s. Family Process, 33(3), 327–340. doi:10.1111/j.1545-5300.1994.00327.x

Giger, J. N., & Davidhizar, R. (2007). Promoting culturally appropriate interventions among vulnerable populations. Annual Review of Nursing Research, 25, 293–316.

Giordano, G., Bjork, J., & Lindström, M. (2012). Social capital and self-rated health—A study of temporal (causal) relationships. Social Science Medicine, 75(2), 340–348. doi:10.1016/j.socscimed .2012.03.011

Halldórsdóttir, B. S., & Svavarsdóttir, E. (2012). Purposeful therapeutic conversations: Are they effective for families of individuals with COPD: A quasi-experimental study. Nordic Journal of Nursing Research and Clinical Studies / Vård I Norden, 32(1), 48–51.

Hamric, A. B., Hanson, C. M., Tracy, M. F., & O’Grady, E. T. (2014). Advanced practice nursing: An integrative approach (5th ed.). St. Louis: W. B. Saunders.

Hamric, A. B., Spross, J. A., & Harmon Hanson, S. M. (2009). Advanced practice nursing: An integrative approach (4th ed.). St. Louis: W. B. Saunders.

Hannon, B., O’Reilly, V., Bennett, K., Breen, K., & Lawlor, P. G. (2012). Meeting the family: Meas- uring effectiveness of family meetings in a specialist inpatient palliative care unit. Palliative and Supportive Care, 10(1), 43–49.

Hartman, A. (1995). Diagrammatic assessment of family relationships. Families in Society, the Journal of Contemporary Human Services, 76(2), 111–122.

Holtslander, L. F., & McMillan, S. C. (2011). Depressive symptoms, grief, and complicated grief among family caregivers of patients with advanced cancer three months into bereavement. Oncology Nursing Forum 38(1), 60–65.

Hsiao, C. Y., & Van Riper, M. (2010). Research on caregiving in Chinese families living with mental ill- ness: A critical review. Journal of Family Nursing, 16(1), 68–100. doi:10.1177/1074840709358405

Hulme, P. A. (1999). Family empowerment: A nursing intervention with suggested outcomes for families of children with a chronic health condition. Journal of Family Nursing, 5(1), 33–50.

Hunt, C. (2003). Concepts in caregiver research. Journal of Nursing Scholarship, 35(1), 27–32. doi:10.1111/j.1547-5069.2003.00027.x

Ingadottir, T., & Jonsdottir, H. (2010). Partnership-based nursing practice for people with chronic ob- structive pulmonary disease and their families: Influences on health-related quality of life and hospital admissions. Journal of Clinical Nursing, 19(19/20), 2795–2805. doi:10.1111/j.1365-2702.2010 .03303.x

Isaakson, A. K., & Ahlstrom, G. (2008). Managing chronic sorrow: Experiences of patients with multiple sclerosis. Journal of Neuroscience Nursing, 40(3), 180–191.

Kaakinen, J. R. (2010). Family nursing process: Family nursing assessment models. In J. R. Kaakinen, V. Gedaly-Duff, E. P. Coehlo, & S. M. Harmon Hanson (Eds.), Family health care nursing: Theory, practice and research (4th ed.). Philadelphia: F. A. Davis.

Kaakinen, J. R., Gedaly-Duff, V., Coehlo, E. P., & Harmon Hanson, S. M. (Eds.). (2010). Family health care nursing: Theory, practice, and research (4th ed.). Philadelphia: F. A. Davis.

Kaakinen, J. R., Harmon Hanson, S. M., & Denham, S. A. (2010). Family health care nursing: An introduction. In J. R. Kaakinen, V. Gedaly-Duff, D. P. Coehlo, & S. M. Harmon Hanson (Eds.), Family health care nursing: Theory, practice and research (4th ed.). Philadelphia: F. A. Davis.

Kamban, S. W., & Svavarsdottir, E. K. (2013). Does a therapeutic conversation intervention in an acute paediatric setting make a difference for families of children with bronchiolitis caused by respiratory syncytial virus (RSV)? Journal of Clinical Nursing, 22, 2723–2733. doi:10.1111/j .1365-2702.2012.04330.x

Kean, S. (2010). The experience of ambiguous loss in families of brain injured ICU patients. Nursing in Critical Care, 15(2), 66–75.

Knafl, K., & Deatrick, J. (1990). Family management behaviors: Concept synthesis. Journal of Pediatric Nursing, 5, 15–22.

Knafl, K. A., Deatrick, J. A., & Havill, N. L. (2012). Continued development of the family manage- ment style framework. Journal of Family Nursing, 18(1), 11–34. doi:10.1177/1074840711427294

Lavadera, A. L. (2011). Assessing family coordination in divorced families. American Journal of Family Therapy, 39(4), 277. doi:10.1080/01926187.2010.539479

CHAPTER 14 ● Family-Focused Nursing Actions 405

2910_Ch14_375-408 05/01/15 12:30 PM Page 405

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Lee, J., Katras, M. J., & Bauer, J. W. (2009). Children’s birthday celebrations from the lived experi- ences of low-income rural mothers. Journal of Family Issues, 30(4), 532–553.

Legrow, K., & Rossen, B. E. (2005). Development of professional practice based on a family systems nursing framework: Nurses’ and families’ experiences. Journal of Family Nursing, 11(1), 38–58.

Li, Q. P., Mak, Y. W., & Loke, A. Y. (2013). Spouses’ experience of caregiving for cancer patients: A literature review. International Nursing Review, 60(2), 178–187. doi:10.1111/inr.12000

Lindgren, L., Burke, M., Hainsworth, M., & Eakes, G. (1992). Chronic sorrow: A lifespan concept. Scholarly Inquiry for Nursing Practice, 6, 27–40.

Looman, W. (2006). Development and testing of the Social Capital Scale for families of children with special health care needs. Research in Nursing and Health, 29(4), 325–336.

Lubkin, I. M., & Larsen, P. D. (2013). Chronic illness: Impact and interventions (8th ed.). Burlington, MA: Jones & Barlett.

Mason, P., & Butler, C. C. (2010). Health behavior change: A guide for practitioners (2nd ed.). Edinburgh: Elsevier.

McGhan, G., Loeb, S. J., Baney, B., & Penrod, J. (2013). End-of-life caregiving. Journal of Gerontological Nursing, 39(6), 45–54. doi:10.3928/00989134-20130402-01

McDaniel, S. H., Campbell, T. L., Hepworth, J., & Lorenz, A. (2005). Family-oriented primary care (2nd ed.). New York: Springer.

McGoldrick, M., Gerson, R., & Petry, S. (2008). Genograms: Assessment and intervention (3rd ed.). New York: Norton.

Meleis, A. I. (Ed.). (2010). Transitions theory: Middle range and situation—Specific theories in nursing research and practice. New York: Springer.

Meleis, A. I. (2012). Theoretical nursing: Development and progress (5th ed.). Philadelphia: Wolters Kluwer Health.

Melvin, C. S., & Heater, B. S. (2004). Suffering and chronic sorrow: Characteristics and a paradigm for nursing interventions. International Journal for Human Caring, 8(2), 41–47.

Mitchell, M., Chaboyer, W., Burmeister, E., & Foster, M. (2009). Positive effects of a nursing intervention on family-centered care in adult critical care. American Journal of Critical Care, 18(6), 543–553.

Moriarty, P. H., & Wagner, L. D. (2004). Family rituals that provide meaning for single-parent families. Journal of Family Nursing, 10(2), 190–210.

Moules, N. J., Simonson, K., Fleiszer, A., Prins, M., & Glasgow, B. (2007). The soul of sorrow work: Grief and therapeutic interventions with families. Journal of Family Nursing, 13(1), 117–141.

Moules, N. J., Simonson, K., Prins, M., Angus, P., & Bell, J. M. (2004). Making room for grief: Walking backwards and living forward. Nursing Inquiry, 11(2), 99–107.

Moules, N. J., Thirsk, L. M., & Bell. J. M. (2006). A Christmas without memories: Beliefs about grief and mother—A clinical case analysis. Journal of Family Nursing, 12 (4), 426–441. doi: 10.1177/1074840706294244

Nelms, T. P., & Eggenberger, S. K. (2010). Essence of the family critical illness experience and family meetings. Journal of Family Nursing, 16(4), 462–486.

Newman, M. A. (2008). Transforming presence: The difference that nursing makes. Philadelphia: F. A. Davis.

O’Leary, J., Warland, J., & Parker, L. (2011). Bereaved parents’ perception of the grandparents’ re- actions after perinatal loss and in the pregnancy that follows. Journal of Family Nursing, 17(3), 330–356.

Pavlish, C. P., & Pharris, M. D. (2012). Community-based collaborative action research: A nursing approach. Sudbury, MA: Jones & Bartlett.

Perkins, M., Howard, V. J., Wadley, V. G., Crowe, M., Safford, M. M., Haley, W. E., . . . Roth, D. L. (2013). Caregiving strain and all-cause mortality: Evidence from the REGARDS study. The Journal of Gerontology: Psychological Sciences and Social Sciences, 68(4), 504–512. Epub 2012 Oct 2. doi: 10.1093/geronb/gbs084

Pierce, L. L., & Lutz, B. J. (2013). Family caregiving. In I. M. Lubkin & P. D. Larsen (Eds.), Chronic illness: Impact and intervention. Burlington, MA: Jones & Bartlett.

Prochaska, J. O., Johnson, S., & Lee, P. (2009). The transtheoretical model of behavior change. In S. A. Shumaker, J. K. Ockene, & K. A. Riekert (Eds.), The handbook of health behavior change (3rd ed.). New York: Springer.

406 CHAPTER 14 ● Family-Focused Nursing Actions

2910_Ch14_375-408 05/01/15 12:30 PM Page 406

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Rando, T. A. (1984). Random notes: The patient is not a dirty word. Family Systems Medicine, 3, 230–233.

Rempel, G., Neufeld, A., & Kushner, K. (2007). Interactive use of genograms and ecomaps in family caregiving research. Journal of Family Nursing, 13(4), 403–419. doi:10.1177/1074840707307917

Richardson, J. B., & Brakle, M. V. (2011). A qualitative study of relationships among parenting strate- gies, social capital, the juvenile justice system, and mental health care for at-risk African American male youth. Journal of Correctional Health Care, 17(4), 319–328. doi: 10.1177/1078345811413081

Roberti, S. M., & Fitzpatrick, J. F. (2010). Assessing family satisfaction with care of critically ill patients: A pilot study. Critical Care Nurse, 30(6), 18–26. doi: 10.4037/ccn/2010448

Robinson, C. A., & Wright, L. M. (1995). Family nursing interventions: What families say makes a difference. Journal of Family Nursing, 1, 327–345.

Rodakowski, J., Skidmore, E. R., Rogers, J. C., & Schulz, R. (2012). Role of social support in predicting caregiver burden. Archives of Physical Medicine Rehabilitation, 93(12), 2229–2236.

Rolland, J. S., & Walsh, F. (2005). Systemic training for health care professionals: The Chicago Center for Family Health approach. Family Process, 44(5), 283–301.

Rollnick, S., Miller, W. R., & Butler, C. (2008). Motivational interviewing in health care: Helping patients change behavior. New York: Guilford Press.

Rook, D. W. (1985). The ritual dimension of consumer behavior. Journal of Consumer Research 12, 251–264.

Roos, S. (2002). Chronic sorrow: A living loss. New York: Brunner-Routledge. Schneider, M., & Stokols, D. (2009). Multilevel theories of behavior change: A social ecological

framework. In S. A. Shumaker, J. K. Ockene, & K. A. Riekert (Eds.), The handbook of health behavior change (3rd ed.). New York: Springer.

Segrin, C., & Flora, J. (2011). Family communication. Mahwah, NJ: Lawrence Erlbaum Associates. Shaefer, S. (2010). Perinatal loss and support strategies for diverse cultures: Discussion paper. Neonatal,

Paediatric and Child Health Nursing, 13(1), 14–17. Shumaker, S. A., Ockene, J. K., & Riekert, K. A. (2009). The handbook of health behavior change

(3rd ed.). New York: Springer. Siminoff, L. A., Wilson-Genderson, M., & Baker, S., Jr. (2010). Depressive symptoms in lung cancer

patients and their family caregivers and the influence of family environment. Psycho-Oncology, 19(12), 1285–1293. doi:10.1002/pon.1696

Svavarsdottir, E. K., & Sigurdardottir, A. (2013). Benefits of a brief therapeutic conversation inter- vention for families of children and adolescents in active cancer treatment. Clinical Journal of Oncology Nursing, 17E, 346–357. doi:10.1188/13.ONF.E346-E357

Sveinbjarnardottir, E. K., Svavarsdottir, E. K., & Hrafnkelsson, B. (2012). Psychometric development of the Iceland Expressive Family Functioning Questionnaire (ICEFFQ). Journal of Family Nursing, 18(3):353–377. doi:10.1177/1074840712449204

Tan, H., Wilson, A., Olver, I., & Barton, C. (2011). The family meeting addressing spiritual and psychosocial needs in a palliative care setting: Usefulness and challenges to implementation. Progress in Palliative Care, 19(2), 66–72. doi:10.1179/1743291X11Y.0000000001

Tomlinson, P. S., Peden-McAlpine, C., & Sherman, S. (2011). A family systems nursing intervention model for paediatric health crisis. Journal of Advanced Nursing, 68(3), 705–714. doi: 10.1111/j .1365-2648.2011.05825.x

United States Department of Health and Human Services. (2012). Healthy people 2020. Retrieved on December 21, 2012 from http://www.healthypeople.gov/2020/default.aspx

University of Michigan Health System. (2006). Children with chronic health conditions. Ann Arbor, MI: Author. Retrieved March 2, 2013 from http://www.med.umich.edu/yourchild/topics/chronic.htm

Veltri, L. (2010). Family nursing with childbearing families. In J. R. Kaakinen, V. Gedaly-Duff, D. P. Coehlo, & S. M. Harmon Hanson (Eds.), Family health care nursing: Theory, practice and research (4th ed.). Philadelphia: F. A. Davis.

Walsh, F. (2003). Family resilience: A framework for clinical practice. Family Process, 42, 1–18. Weihs, K., Fisher, L., & Baird, M. (2002). Families, health and behavior: A section of the Commissioned

Report by the Committee on Health and Behavior: Research, Practice and Policy. Families, Systems and Health, 20(1), 7–46.

Weiss, R. S. (1974). The provisions of social relationships. In Z. Rubin (Ed.), Doing unto others (pp 17–26). Englewood Cliffs, NJ: Prentice Hall.

CHAPTER 14 ● Family-Focused Nursing Actions 407

2910_Ch14_375-408 05/01/15 12:30 PM Page 407

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Wiegand, D. L. M. (2006). Withdrawal of life-sustaining therapy after sudden, unexpected life-threat- ening illness or injury: Interactions between patients’ families, health care providers, and the healthcare system. American Journal of Critical Care, 15(2), 178–187.

Williams, A., & Bakitas, M. (2012). Cancer family caregivers: A new direction for interventions. Journal of Palliative Medicine, 15(7), 775–783. doi:10.1089/jpm.2012.0046

Wittenberg-Lyles, E., Goldsmith, J., Ragan, S. L., & Sanchez-Reilly, S. (2012). Dying with comfort: Family illness narratives and early palliative care. Journal of Social Work in End-of-Life and Palliative Care, 8(2), 202–203.

Wood, B. L., Klebba, K. B., & Miller, B. D. (2000). Evolving the family biobehavioral model: The fit of attachment. Family Process, 39(3), 319–344.

Wood, B. L., Klebba, K. B., & Miller, B. D. (2002). Evolving the biobehavioral family model: The fit of attachment. In Boss, P. G. (Ed.), Family stress: Classic and contemporary readings. Thousand Oaks, CA: Sage.

Worden, J. W. (2009). Grief counseling and grief therapy: A handbook for the mental health practitioner (4th ed.). New York: Springer.

Wright, L. M., & Bell, J. M. (2009). Beliefs and illness: A model for healing. Calgary, Alberta, Canada: 4th Floor Press.

Wright, L. M., & Leahy, M. (2013). Nurses and families: A guide to family assessment and intervention. Philadelphia: F. A. Davis.

Zerwekh, J. V. (2006). Nursing care at the end of life: Palliative care for patients and families. Philadelphia: F. A. Davis.

Zhang, A. Y., & Siminoff, L. A. (2003). Silence and cancer: Why do families and patients fail to communicate. Health Communication, 15(4), 415–429.

408 CHAPTER 14 ● Family-Focused Nursing Actions

2910_Ch14_375-408 05/01/15 12:30 PM Page 408

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:28:20.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Family-Focused Care in Acute Illness Sandra K. Eggenberger ● Marcia Stevens

C H A P T E R 10

C H A P T E R O B J E C T I V E S

1. Explore the family experience during acute illness. 2. Examine stress, uncertainty, and suffering that may occur in a family during an acute illness

experience. 3. Review evidence that supports the presence of a family and family health during acute illness. 4. Describe nursing actions that support families during transitions in acute care illness. 5. Analyze environmental factors that support and challenge family-focused nursing practice in

acute care settings.

C H A P T E R C O N C E P T S

● Acute care ● Acute care environments ● Bedside rounding ● Discharge ● Empowerment ● Family advisory council ● Family communication ● Family decision making ● Family interactions

● Family meetings ● Family processes ● Policies and visitation ● Satisfaction ● Stress ● Suffering ● Support ● Uncertainty

Introduction

Caring for patients in an acute care setting is the type of challenging practice that many nurses think about when envisioning their career. Nursing practice in this setting is often focused on meeting acute care needs of individuals, and is less centered on family needs. Yet, caring family members often accompany individuals in acute care settings and frequently they are distressed as they experience the illness and complex care provided to their loved ones. These family members need nurses who understand their experience and will develop a partnership that comforts them during this stressful time and prepares them for the future. This chapter describes the family experience during an acute care illness and the nursing actions needed to support families during illness trajectories. Barriers to family-focused

253

2910_Ch10_253-292 06/01/15 12:27 PM Page 253

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

nursing care in the acute care setting and ways to overcome them are addressed. Without nursing practice focused on the family, the individual with an illness could face readmis- sions, poor outcomes, and dissatisfaction (Bauer, Fitzgerald, Haesler, & Manfrin, 2009) and the family faces added stress and challenges (King et al., 2013). An exemplar case study of a family in which a family member experiences an acute illness is threaded throughout the chapter to illustrate ways family-focused nursing care can be provided.

Acute Care Settings

Acute care is needed for severe illness, traumatic injuries, disabilities, surgery, and compli- cations of chronic conditions. Management of these situations may require admission to a medical unit, transfer to an intensive care unit (ICU), surgical intervention, or treatment in the emergency department. Persons admitted for acute care, along with family members, are anxious about their diagnosis, treatment, and outcomes. Even when procedures are elective, the experience can be stressful. The goal is to resolve the illness, injury, or other catastrophic dilemma as quickly and effectively as possible. Acute care stays are often brief but intense experiences. The equipment, treatments, interventions, numerous care providers, complex language used by care providers, and overall acute care culture are all unfamiliar to the patient and family.

The acute setting also poses unique challenges for the nurse. One must balance the acute care demands of the individual while partnering and communicating with the family throughout transitions that occur during an acute care stay (King et al., 2013; Strang, Henoch, Danielson, Browall, & Melin-Johansson, 2014). A nurse’s focus on the complex care of the family member with the condition is a priority for both the patient and the family. Nurses’ beliefs about the role of family members in acute care settings may be contrary to what the family expects, as the family attempts to fulfill roles as protector for their family member (Carr, 2014; Eggenberger & Nelms, 2007; Vandall-Walker & Clark, 2011; Wright & Bell, 2009). These beliefs may interfere with nurses’ ideas about their capacity to provide family-focused care in acute care settings. Nurses focus on family often as background; families are often excluded, and may be viewed as a barrier to care delivery (Davidson, 2009; Davidson, Jones, & Bienvenu, 2012; Santiago, Lazar, Depeng, & Burns, 2014; Verhaeghe, Defloor, Van Zuuren, Duijnstee, & Grypdonick, 2005). Yet, nurses who think family understand that a nurse has profound power and influence over the tone and outcome of the experience for families and includes families as partners, develops relationships with family members, and addresses family concerns during the experience of an acute illness to improve care (Bell, 2011; Nelms & Eggenberger, 2010; Wright & Leahey, 2013).

Family Illness Experience During a Family Member’s Acute Illness

Family-focused nursing care is important because illness is a shared family experience that can be overwhelming and threaten family health and the family’s ability to support the member of the family with an acute illness (Azoulay et al., 2003; Davidson, Jones, & Bienvenu, 2012; Marshall, Bell, & Moules, 2010; McAdam, Dracup, White, Fontaine, & Puntillo,2010; Williams, 2005). Hospitalization with an acute illness is stressful and brings worries, decision making, and changes in family processes such as family communication, bonds, and coordination. Family members of an acutely ill person experience multiple

254 CHAPTER 10 ● Family-Focused Care in Acute Illness

2910_Ch10_253-292 06/01/15 12:27 PM Page 254

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

threats from the diagnosis of an illness, admission to an acute care setting, the environment, transitions, and complex hospital treatments. Concerns such as stress, uncertainty, and suf- fering often emerge during a family’s experience with an acute illness (Davidson, Jones, & Bienvenu, 2012; Nelms & Eggenberger, 2010; Tong & Kaakinen, 2015).

Family Stress

Family stress can be described as the “pressure or tension in the family system—a distur- bance in the steady state of the family” (Boss, 2002, p. 16). When faced with an acute illness, families are stressed because of changes in family life, threats to the individual and family, lives that are on hold, lack of information and communication, and waiting for answers (Davidson et al., 2007; Vandall-Walker & Clark, 2011). Diagnosis of an illness or admission to an acute care setting, a transfer, and discharge can increase stress as a family adjusts to the unknowns and changes (King et al., 2013; Stacy, 2012). Nurses who think family anticipate these times of family stress and offer support, explanations, and information.

The meanings of events and perceptions during an acute illness affect the degree of stress experienced (Boss, 2002; Davidson, 2010). Families try to gain some control in new situ- ations by using behaviors they believe will fulfill their needs (Hardin, 2012). For example, a family questions nurses about care and treatments to better understand. Some family members might be hesitant to ask questions; others are abrupt, annoyed, and agitated. Nurses who are family focused initiate relationships and conversation with a family to understand their experience and perceptions (Bell, 2011; Hallsdottir & Svavarsdottir, 2012; Svavarsdottir, Tryggvadottir, & Sigurdardottir, 2012).

Individuals in a family unit may have views that differ from one another and cause con- flict and overwhelm family members (Appleyard et al., 2000; Boss, 2002; Fontana, 2006). Some family members are angry, others are silent, some are conflictual, and still others work together (Warnock, Tod, Foster, & Soreny, 2010). Family members may argue with one another about who is helping more, who should make decisions, or who will be the leader of the family in supporting the family member with acute illness. Although an illness can bring a family closer together, it can also cause conflicts and disrupt a family and the usual functions, roles, and tasks (Cannon, 2011; Eggenberger & Nelms, 2010; Wiegand, 2008; Wiegand, Deatrick, & Knafl, 2008). Nurses who think family address the conflicts and recognize a family faces actual and perceived threats (Hardin, 2012). Actions by nurses must help families to communicate, resolve conflict, and reach consensus (Pastor-Montero et al., 2012). Nurses may not be able to solve all issues, but they can maximize care out- comes by providing clear and consistent explanations to a family, advocating for a family or individual family member while communicating and helping family members to interact and share their thinking (Fumagalli et al., 2006; Hardin, 2012; Khalaila, 2013). Table 10.1 identifies a few examples of research studies that explore stress during an acute illness and provide direction for family care.

Family Uncertainty

Distress of uncertainty is a central theme of the illness experience in acute care settings as family members withstand the unknowns of the health care environment, question illness outcomes, and struggle to make decisions and alter their family routines (Dupuis, Duhamel, & Gendron, 2011; Fontana, 2006; Trimm & Sanford, 2010; Vandall- Walker & Clark, 2011; Wiegand, 2008). Uncertainty has been defined as the inability to identify meanings of an illness event that influences abilities to manage situations

CHAPTER 10 ● Family-Focused Care in Acute Illness 255

2910_Ch10_253-292 06/01/15 12:27 PM Page 255

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

256 CHAPTER 10 ● Family-Focused Care in Acute Illness

TABLE 10 -1 L iterature Related to Family Stress W ith A cute and Critical Illness

RESEARCH

Radfar, Ahmadi, & Fallahi K hoshknab (2013)

Davidson, J ones, & Bienvenu (2012)

J ones, Backman, & Griffiths (2012)

Black, Boore, & Parahoo (2011)

Nelms & Eggenberger (2010)

Davidson (2009)

FAMILIES STUDIED

Family members of patients suffering from depression

Families who experienced critical illness

Families experiencing a critical illness

Patients and families hospitalized with critical illness

Families experiencing a critical illness

Families experiencing a critical illness

FINDINGS

Families work to tolerate a great amount of stress with depression.

Psychological, physical, and financial factors impose turbulent life on families.

Family responses to critical illness include development of adverse, acute stress disorder and post-traumatic stress.

Post-traumatic stress occurs in relatives of critically ill individuals. An intervention of diaries may alleviate post- traumatic stress.

Nurse-led facilitation designed to support family comfort and access to patient positively influenced patient psychological recovery from ICU.

Stress of critical illness is increased when communication is not therapeutic and maintained or exchange of information is inconsistent.

Families experience stress and anxiety.

IMPLICATIONS: FAMILY-FOCUSED NURSING ACTIONS

Reduce burden of family by providing knowledge about how to communicate with their family member.

Offer emotional support resources to patients and families.

Optimal communication and inclusion in care can reduce family complications of stress.

Refer families to support groups and follow-up care after critical illness experience.

Provide patients and families with diaries during a critical illness.

Guide a family member in communicating with a critically ill patient.

Nurse-family meetings can minimize the stress and distress of critical illness.

Family-centered care helps to meet the needs of families.

2910_Ch10_253-292 06/01/15 12:27 PM Page 256

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

(Mishel & Clayton, 2008). Over the past decade, uncertainty has been described as a major and pervasive component of the illness experience that affects clinical outcomes (Hansen et al., 2012).

The uncertainty in illness theory proposes that uncertainty emerges in illness conditions when there is a lack of information, complexity, unpredictability, and ambiguity (Mishel, 1997; Mishel & Clayton, 2008). These issues certainly exist in the acute care setting. Acute illness causes family difficulties as they try to interpret information and deal with the un- predictability of outcomes (Mishel & Clayton, 2008). Nurses who think family prepare families for events that signal changes in treatment or condition and explain what matters to the patient and family in ways the family can understand (Hansen et al., 2012). Explain- ing symptoms and the possible effects of treatments must occur repeatedly with multiple family members who have various understandings at different times (Hansen et al., 2012). The complex system of care and multiple environmental transitions are challenging to the family. Various individuals in the system may use different words or interpret situations in their own way which may leave a family confused and mistrustful (Eggenberger & Nelms, 2007). Nurses who think family continually strive to clarify messages, treat concerns re- spectfully, and assist families in managing the unknowns and preparing for the future (Hardin, 2012; Stayt, 2009; Tapp, 2001; Van Horn & Kautz, 2007). Table 10.2 identifies a few examples of early and current research that explore uncertainty and provide direction for family care. Nurses who consistently exchange information with families, prepare them for upcoming events, and offer clarity can help families manage uncertainty during acute illness.

CHAPTER 10 ● Family-Focused Care in Acute Illness 257

TABLE 10 -2 Research Related to Family Uncertainty During an Illness Ex perience

RESEARCH

Hansen et al (2012)

Eggenberger, Meiers, K rumwiede, Bliesmer, & Earle (2011)

Sammarco & K onecny (2010)

GROUPS STUDIED

A synthesis of 15 qualitative studies exploring patient experiences with uncertainty during illness

Families with a family member living with various chronic illnesses

Latina breast cancer survivors

OVERALL FINDINGS

Implications for nursing practice are evident in qualitative study findings.

A process of family reintegration occurs within a context of uncertainty.

Latina population reported higher level of uncertainty when compared to Caucasian.

IMPLICATIONS: FAMILY-FOCUSED NURSING ACTIONS

Organize the trajectory of an illness through the health care system.

Support patients through relationships.

Provide knowledge through clear and accurate communication.

Include the family to reduce uncertainty.

Assist family to manage the unknowns, plan for the future, and protect their ill family member.

Acknowledge the struggle to adjust and manage trajectories.

Address cultural differences in managing uncertainty.

Anticipate unique needs based on culture.

C o n t in u e d

2910_Ch10_253-292 06/01/15 12:27 PM Page 257

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

258 CHAPTER 10 ● Family-Focused Care in Acute Illness

TABLE 10 -2 Research Related to Family Uncertainty During an Illness Ex perience— cont’ d

RESEARCH GROUPS STUDIED OVERALL FINDINGS

IMPLICATIONS: FAMILY-FOCUSED NURSING ACTIONS

Stone & J ones (2009)

Eggenberger & Nelms (2007)

Brashers (2003)

Northouse et al (2002)

Sammarco (2001)

Adult children of parents diagnosed with Alzheimer’s disease

Families experiencing critical illness

Individuals with HIV illness

Women with recurrent breast cancer and their family members

Younger breast cancer survivors below age 50

Sources of uncertainty include unpredictability of social relationships and potential family conflict.

Uncertainty is a concern for family due to foreign environment, lack of understanding of treatment, and limited consistent information exchange.

Increased uncertainty when family not included in the care of member or lacked connection with the nurse.

Unpredictable interpersonal reactions contribute to uncertainty.

Family satisfaction with a family program that focused on giving information and uncertainty management techniques built on family strengths.

Negative correlation between perceived social support and uncertainty.

Negative correlation between social network size and uncertainty.

Negative correlation between uncertainty and quality of life.

Nurses need to assist family members to manage conflicts and their relationships.

Explanations repeatedly to family members increase understandings.

Clarify interpretations of other health care provides.

Develop trusting relationship with family to minimize uncertainty.

Engage in therapeutic conversations throughout illness.

Prepare family for changes in environment, illness, or management.

Address family perceptions and reactions to events of the HIV illness.

Identify and build on family strengths.

Provide consistent exchange of information.

Explore available social supports and access to social network.

Consider patient and family’s beliefs.

2910_Ch10_253-292 06/01/15 12:27 PM Page 258

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Family Suffering

Suffering in the acute care setting is most often attributed to the ill person; however, family members often hurt, worry, and feel the pain alongside their family member (Weingarten, 2012). Cassell defined “the state of severe distress associated with events that threaten the intactness of the person” (Cassell, 1991, p. 33). An individual with respiratory failure may be suffering with respiratory distress, but the family may also experience distress as they attempt to protect their loved one and despair as they observe the dyspnea. Suffering has been described as “physical, emotional, or spiritual anguish, pain or distress” (Wright, 2005, p. 3) that most certainly can occur in a family. Yet, family suffering may be over- looked when a priority is the family member with an acute illness. Family members have concerns about care outcomes, treatment decisions, and the changes that influence family life or threaten the family unit (Wright, 2005). Conflicts and tension often arise among members who hold different beliefs; nurses who fail to include or guide the family can actually magnify the suffering experience during acute care (Eggenberger & Nelms, 2007; Vandall-Walker & Clark, 2011). Suffering with a family member during an acute illness may not be eliminated, but it can be acknowledged and addressed, which makes a differ- ence to the family (Martinez, D’Artois, & Rennick, 2007; Wright, 2005; Wright & Bell, 2009). See Table 10.3 for additional literature about suffering.

CHAPTER 10 ● Family-Focused Care in Acute Illness 259

TABLE 10 -2 Research Related to Family Uncertainty During an Illness Ex perience— cont’ d

RESEARCH GROUPS STUDIED OVERALL FINDINGS

IMPLICATIONS: FAMILY-FOCUSED NURSING ACTIONS

Mast (1998)

Mishel (1997)

Breast cancer survivors

Individuals and family members living with acute and chronic illness

Uncertainty is stressful and pervasive.

Uncertainty is a response to fear of recurrence, long- term treatment side effects.

Social support decreases uncertainty.

Uncertainty develops in acute and chronic illness.

Reducing uncertainty in family members increases capacity to support ill member and decreases family’s emotional distress.

Explore fears and discuss outcomes of treatment.

Address perceived and actual threats.

Acknowledge uncertainty. Identify support in systems. Assist family members to

maintain supportive network.

2910_Ch10_253-292 06/01/15 12:27 PM Page 259

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

260 CHAPTER 10 ● Family-Focused Care in Acute Illness

TABLE 10 -3 L iterature Related to Family Suffering During an Illness Ex perience

AUTHORS

Marshall, Bell, & Moules (2010)

Verhaeghe, van Z uuren, Grypdonck, Duijnstee, & Defloor (2010)

Chintana (2010)

Eggenberger & Nelms (2007)

Isovaara, Arman, & Rehnsfeldt (2006)

Tapp (2001)

PREMISE AND FINDINGS

Illness is viewed within family relationships.

Relational suffering is a complex human experience that is a threat to wholeness and related to relationships with others (Marshall, 2007).

Exploration of relational suffering in families with a family member experiencing mental illness.

Families focus efforts on making suffering bearable following a traumatic coma.

Families attempt to protect entire family and loved ones from unnecessary suffering.

Family suffering with persons living with HIV infection and AIDS.

Practice that fails to recognize the family as the unit of care invites unnecessary suffering.

Developed and implemented a nursing intervention with the family.

Families suffer as they face life- threatening illness of a family member.

Nurses can magnify family suffering if they exclude and fail to connect with families.

Review explores family suffering related to war experiences.

Families suffer from the physical and psychosocial disorders of veterans.

Families function from a place of compassion.

Families suffer as they manage their own distress and face life- threatening illness of a family member

Emphasis on the relational elements of suffering is important to nursing pratice.

IMPLICATIONS: FAMILY-FOCUSED NURSING ACTIONS

A Family Systems Nursing Framework informed by the Illness Beliefs Model can examine beliefs to minimize suffering.

Nurses who use therapeutic conversation to explore illness narratives and suffering experiences can soften relational suffering.

Supporting family members in their efforts to protect their loved ones should be encouraged.

Encourage open and flexible visiting hours to allow families to protect.

Nursing interventions focused on developing nurse-family trusting relationships, exploring illness beliefs, promoting facilitating beliefs and challenging constraining beliefs, and affirming family strengths soften family suffering.

Nurses who develop connecting relationships with families help families endure the suffering.

Family must be viewed as a unique part of this experience.

Nurse-family conversations created new understandings among family members that were helpful to the relationships, addressed concerns that contributed to suffering, and explored uncertainties with illness.

Illness conversations with nurses can alleviate family suffering.

Therapeutic conversations promote family healing.

2910_Ch10_253-292 06/01/15 12:27 PM Page 260

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Ecological Perspective of the Family Acute Illness Experience

An ecological perspective using the Family Health Model points out threats to family health in context of an acute illness (Denham, 2003). The daily routines of the family’s members change to manage demands of the acutely ill member and that person’s usual roles (Denham, 2003; Sacco, Stapleton, & Ingersoll, 2009). During the acute care event health routines of family members change as they attend to the ill member’s personal needs. When a family waits for information, they sit long periods in waiting rooms and fail to attend to personal needs (Trochelman, Albert, Spence, Murray, & Slifcak, 2012). They lack sleep, may resort to eating meals from snack machines, forget their medications, and possibly postpone their regular medical treatments. During acute care, some usual family work continues, but advocacy for the ill member requires attention. Families try to balance usual life demands while satisfying ill member needs, offering protection and comfort, and managing personal concerns (Van Horn & Tesh, 2000). Families need a nurse’s support while managing these demands.

Once the acute episode resolves, families often serve as caregivers when the individual returns home. Frequently the ill family member still requires care and family members need to be fully prepared to provide the necessary support (Popejoy, 2011). Preparing for discharge from the acute care setting often includes teaching that focuses on activity restrictions, diet, medications, and follow-up appointments. These details are important, but they may not be the family’s most pressing needs (Popejoy, 2011). Yet, families may be reluctant to discuss concerns such as adequacy of health insurance and financial debt. How will they manage travel to follow-up medical visits or address the physical and emotional demands of care? Families need a system perspective of care, rather than an elemental patient-focused view (Hardin, 2012). Intentional planning for a coordinated acute care discharge is required to avoid possible readmissions and emergency care.

A nurse who is family focused also considers the context of the family home, even while the individual with an illness is hospitalized. Ill individuals may return to households where prior family routines are now barriers to health and deterrents to healing. For example, an individual with a recent cardiovascular event may require extensive changes in the family diet. With the illness event, the family must acquire new knowledge and skills (Bjornsdottir, 2002; Paterson, Kieloch, & Gmiterek, 2001; Popejoy, 2011). Families need support, edu- cation, and skills for home care that is often complex (Popejoy, 2011). Treatments often need to continue when an individual returns home and families need to know ways to support their family member. Family nurses can help members access clear information in timely ways, plan for realities, and guide problem solving for the acute stay and discharge home (Hansen et al., 2012; Popejoy, 2011; Weiss et al., 2007).

A family’s home and household are rooted in a complex interdependent neighborhood of community and larger society systems. Families and their interdependent environments can provide resources for acutely ill persons, but resources across families are not all equal. A nurse who thinks family considers the unique environment and functions of each family member and plans. A family-focused nurse works with the family to seek resources and manage the challenges of a household environment during a family mem- ber’s acute illness. An ecological perspective of the individual with an acute condition and the family’s environment has potential to improve care, access to resources, and adjustment to transitions (Denham, 2003). Nurses continue to offer support and guid- ance as the family adjusts their environment and routines. Nurses worldwide are working to improve the health of families. Box 10.1 describes Dr. Chieko Sugishita, a leader in Japan who dedicated her career to transforming the care of families through research, education, and practice.

CHAPTER 10 ● Family-Focused Care in Acute Illness 261

2910_Ch10_253-292 06/01/15 12:27 PM Page 261

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Nursing Practice in Acute Care Settings

Evidence suggests nurses play pivotal roles in comforting the family, advocating for families, guiding families, and developing a connecting partnership with families during an acute illness experience (Bell, 2011; Butler, Copnell, & Willetts, 2014; Chesla & Stannard, 1997; Cypress, 2011; Eggenberger & Nelms, 2007; Meiers & Brauer, 2008; Meiers & Tomlinson, 2003; Soderstrom, Benzein, & Saveman, 2003; Svavarsdottir et al., 2012; Tomlinson, Peden-McAlpine, & Sherman, 2012; Wiegand, 2008). Nursing practice influences illness outcomes and prepares families for their support role (Chesla, 2010). Nurses guide a family to cope with the challenges of an illness and strive to meet the needs of the family.

The acute care experience has been studied for years and findings have identified that families need information, closeness, assurance, support, and comfort (Coulter, 1989; Leske, 1991; Molter, 1979). Families need nurses to provide a consistent exchange of information and guidance (Hardin, 2012; Nelms & Eggenberger, 2010). Families want to be near, watch over, and advocate for their ill member (Dudley & Carr, 2004; Eggenberger, Krumwiede, Meiers, Bliesmer, & Earle, 2004; Hardin, 2012; Khalaila, 2013). Families do not want to be left out; they want to be included in the care (Khalaila, 2013; Sacco et al., 2009). During acute situations, families are often faced with puzzling rituals, rules, technology, and strangers in an unfamiliar environment that is confusing and intensifies distress (Hupcey, 1998; Nelms & Eggenberger, 2010). This distress can be exacerbated when nurses view family as outsiders and allow them limited involvement and marginal control in decisions

262 CHAPTER 10 ● Family-Focused Care in Acute Illness

BOX 10-1

Family Tree

Chiek o Sugishita, RN, PhD (Japan)

Chieko Sugishita, RN, PhD, provided bold leadership and tireless dedication to the early development of family nursing in Japan. Her efforts to build the science of family nursing began in 1971 as a research assistant at the University of Tokyo. For many years, she taught family health care as a lecturer, and in 1992, she was promoted to full professor and invited to lead the Department of Family Nursing at the University of Tokyo. In her leadership role at one of Japan’s most prestigious universities, Dr. Sugishita carefully developed her strategic vision for advancing family nursing. She established it as an academic discipline, recruiting well-known researchers, aligning with strong political supporters, and developing graduate level education in family nursing. In 1994, she launched the J apanese J ournal of Research in Family Nursing (JJRFN), which provided a forum for scholarly exchange. She was a leader in forming the first national family nursing organization of its kind in the world. On October 1, 1994 she organized and chaired the first national meeting of the Japanese Association for Research in Family Nursing (JARFN, < http://square.umin.ac.jp/jarfn/jarfn/index.html> ) and served as its first president. JARFN currently has over 1,500 members and hosted the Tenth International Family Nursing Conference in Kyoto, Japan, in 2011. JARFN was one of the earliest nursing associations to be officially enrolled in the Japanese Scientific Academy. Dr. Sugishita nurtured a large community of family nursing researchers, educators, and practitioners and encouraged cross-fertilization of ideas by inviting family nursing colleagues from around the world to offer ideas in workshops and conferences. She encouraged small learning groups of Japanese nurses to travel abroad to visit programs of excellence in family nursing. In 2002 she translated the book B eliefs: The Heart of Healing in Families and Illness (Wright, Watson, & Bell, 1996) into Japanese language. She also published a Japanese undergraduate family nursing textbook. In 2005, at the Seventh International Family Nursing Conference in Canada, she was recognized for her significant pioneering contributions to family nursing. Dr. Chieko Sugishita died in 2007, but her influence continues to live on through her former students and colleagues who are current leaders.

2910_Ch10_253-292 06/01/15 12:27 PM Page 262

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

about what is happening (Vandall-Walker & Clark, 2011). Families want reassurance their family member is receiving optimal care.

Families need nurses who can provide quality care for their family member, but who are also able to develop relationships with the family unit. Yet, evidence suggests nurses might see needs for family involvement, but often feel ill prepared to develop caring relationships with them (Stayt, 2009). With multiple families’ multiple needs, nurses may not be able to address every family concern, but a nurse can offer frequent honest information, support, and guidance with sensitivity in ways that meet the needs of families (Khalaila, 2013).

The nurse in the acute care setting faces several challenges to family-focused care. Tech- nological advances, numerous care providers, and complex delegated medical tasks in this setting require nursing practice to integrate complex technical and relational skills to care for the physical needs of the ill individual and the emotional needs of the entire family (Eggenberger & Regan, 2010). A nurse collaborates within an interdisciplinary team whose members all strive to communicate with the families. A nurse in this setting must prioritize the care for an individual with an acute illness and the family who wants to know their family member is cared for with competence and compassion (Kaakinen, Coehlo, Steele, Tabacco, & Hanson, 2015). Family nurses encourage active roles by family members throughout the acute care stay and help them prepare for transitions. Nurses who are focused on the family invite them to participate: “Would you like to be involved in caring for your husband?” Knowledge and skills to assume caregiving roles are needed and family nurses assist them in making needed transitions. “Your husband will go home with this dressing, would you like to come closer and watch?” Nurses must assume that most fam- ilies have questions, but they don’t always know what or who to ask or are afraid to ask. A nurse acknowledges this difficulty, “At times it is difficult for a family to know what questions to ask, what is your most pressing concern right now?”

Families want and need nurses to initiate relationships with them (Bell, 2011). Nurses who are sensitive to family needs are trusted because they provide therapeutic interactions and initiate therapeutic conversations (Box 10.2) (Wright & Leahey, 2013). Nurses who think family focus on the patient and family experiences, rather than the patient alone. They are prepared for the distress that might result in the event of a life-changing acute illness. Nursing actions focused on the family in the acute care setting strive to promote health and well-being of the family unit. Patient-centered models and family-focused care have unique foci, approaches, beliefs, and practices for the nurse (Table 10.4). Box 10.3 describes a program of research in New Zealand that addresses family-focused care tied to community care and promotes a model of care focused on family health. Box 10.4 introduces Dr. Michiko Moriyama who has demonstrated outstanding global leadership in family nursing.

CHAPTER 10 ● Family-Focused Care in Acute Illness 263

BOX 10-2

Q uestions to Begin a Therapeutic Conversation

Initiating conversations can be a challenge for nursing students and novice nurses. Asking open- ended questions is a good way to obtain information and share information with individuals and family members. Here are some examples of questions to ask:

● What kinds of questions do you have about the care that your family member will receive while you are here?

● Is this your first stay in this care center? If so I would like to tell you some things that will be useful. ● The words nurses and other health professionals use can be confusing; have you heard some

terms that you would like to have better explained? ● What can I help you with the most right now? ● I understand this is a difficult time for you and your family. What is your main concern right now?

2910_Ch10_253-292 06/01/15 12:27 PM Page 263

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

264 CHAPTER 10 ● Family-Focused Care in Acute Illness

TABLE 10 -4 Nursing Practice Comparison Between Patient-Centered Models and Family -Focused Care

ELEMENTS OF NURSING PRACTICE

Focus of nursing practice

Relational stance of the nurse

Aims of nursing care actions

Nurses’ attitude

Nursing actions

Significance of family involvement in care

Acute care setting environment

PATIENT-CENTERED MODEL

Outcomes for illness and injury focused on the individual as care recipient

Relationship primarily directed toward ill person

Therapeutic actions focus on the individual’s acute needs with consideration of family involvement as background focus

Emphasis on delegated tasks and independent nursing actions with ill person

Focus of nursing care is problems linked with ill person

Nurse directs care of ill hospitalized individual

Nurses are expert decision makers who communicate with the family

Nurse prepares ill person for discharge with limited attention to family support or unique family needs

Nurse cares for ill individual with a focus on disease or illness

Family viewed as background to the illness recovery

Family included at times while focus is on the care of ill person

Medical and health care providers are primary provider of direction for ill person’s care

FAMILY-FOCUSED CARE

Outcomes for individual and family unit focused on continuous coordinated care supporting health of individual and family.

Relationship directed toward individual with an illness and family unit.

Therapeutic actions aimed at individual’s acute needs with intentional consideration of building a therapeutic individual-nurse-family partnership, including the family, and caring for the family.

Emphasis on delegated tasks and collaborative nursing actions with ill person and family unit.

Focus of nursing care is health of ill person and family unit.

Nurse shares responsibility for care of ill person with family unit and they collaborate in care of ill person and family unit.

Nurse involves ill person and family unit in decision making and communication while recognizing expertise of the family.

Nurse prepares ill person and family unit for discharge and considers concerns of both patient and family continuity of care and family health.

Nurse cares for ill persons and family unit with a holistic focus on wellness, complication prevention, and self-management.

Family central to the care of the ill person and family health.

Family included with mutual goals on healing and wellness.

Families, nurse, and others care for the ill person and family unit and provide direction for care.

2910_Ch10_253-292 06/01/15 12:27 PM Page 264

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Case Study Phase I: Introduction

To better understand the influence of nursing actions and family responses during an acute illness, an evolving case scenario of the May family will unfold throughout the chapter. The May family case study serves as an example of common situations experi- enced during an acute illness episode. Aspects of the case are described in each phase and then followed with discussion points that describe family experiences and particular family-focused nursing actions.

John May is 38 years old and is married to Sarah, who is 40 years old. They live in a suburban community of about 50,000 people. John is the chief executive of a large corpo- ration and Sarah is a high school teacher. They have two children, 16-year-old son, Adam,

CHAPTER 10 ● Family-Focused Care in Acute Illness 265

BOX 10-3

Evidence-Based Practice

Innovation in health care delivery is a national and global concern that needs to respond effectively and efficiently in ways that are not cost prohibitive. In the United Kingdom, they speak of “ putting people first,” in the United States there is conversation about “ patient-centered medical homes,” and in New Z ealand the slogan is “ better, sooner, more convenient.” How can nurses be part of a changing workforce and contribute to innovative system reform? Needs for population health care suggest that it might be time to move away from primary, secondary, and tertiary thinking or care that primarily focuses on individuals. Dr. Merian Litchfield has long been interested in the predicament of young families living in complex health circumstances. Her initial studies allowed for home visits with naturally flowing conversations that created formats for future visits. Through these actions, she saw families transformed as they gained abilities to be proactive in their daily lives. She began to understand that family health was a process with partnerships, health factors, dialogue, and meanings.

The next phase of this research used case management. Specialty and family nurses formed a case team. They used caring relationships and fiscal responsibility in mentoring families with complex problems. Using a cooperative approach, the nursing teams used group meetings to discuss families’ significant problems. They were addressed through what was called a “ healthcare package,” or HP. The teams gained an academic understanding about the ways family nursing practice improved health outcomes, increased satisfaction, addressed self-management concerns, and provided more integrated and effective care. In this care form, family nurses were leaders.

A third aspect of this program of research was to identify ways the family nurse role could make sense to various stakeholders including those in health care and community settings. A 3-year project with a rural deprived population used a participatory paradigm or partnership. Family health was viewed as neither fixed nor generalized. Nurses moved to become recognized parts of the community and visited with families whenever their health complexity became an issue. The family HP represented a collaborative interdisciplinary effort orchestrated by the family nurses and tailored to family needs. The essential aspects of this model are that it was people centered, integrated service design and delivery, was cost effective, offered a coherent skill mix and competencies, and encouraged professional nurse development. This care model used family nursing as the key factor in health care design. Family nursing honored the “ humanness of the health circumstances” through this model, which was tested in New Z ealand.

Source: Litchfield, M. C. (2011). Family nursing: A systematic approach to innovative health care delivery. In E. K. Svaversdottir & H. Jonsdottir (Eds.), Family nursing in action (pp. 285–307). Reykjavik, Iceland: University of Iceland Press.

2910_Ch10_253-292 06/01/15 12:27 PM Page 265

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

and 14-year-old daughter Amanda. The family is close knit and spends much time together. Parents attend their children’s sports activities and assist them with homework. They have lived in their home for a long while and have neighborhood friends who are like family. Members of the May family regularly see their physician, but no one has ever been hospitalized. Adam was hurt playing basketball a few months back and had stitches in the emergency room. Adam has asthma, which is well controlled with medication and preven- tive behaviors, and regularly sees his family physician.

John has a history of severe asthma and chronic hypertension; both conditions have been controlled for many years with several medications. John weighs 250 pounds, a large amount for his 5'10" height. He has been trying to lose weight and eat healthier. He smokes when under stress, but is trying to quit. Neither Sarah nor Amanda has health concerns. Their extended family lives in different states and is only seen on holidays or vacations. Joe May, John’s father, died at a young age from a severe asthma attack. He was hospitalized with several episodes of respiratory problems before his death. Recently, John has been dealing with an ongoing respiratory problem and was treated with antibiotics by his family physician.

Case Application: Ecological Perspectives

The context of acute illness for the May family has many factors to consider. This family has lived in the same home and community for many years with few health problems. The family functions or interacts in ways members value. They have some health challenges but try to take precautions. John felt great loss when his father died and worries about what his family would do without him. The May parents work, but John’s job provides most of the finances for their present lifestyle. His family encourages him to lose weight, quit smoking, and be more active.

266 CHAPTER 10 ● Family-Focused Care in Acute Illness

BOX 10-4

Family Tree

Michik o Moriyama, RN, PhD (Japan)

Michiko Moriyama, RN, PhD, is a professor of clinical nursing, at the Institute of Biomedical and Health Science, Division of Nursing Science, at Hiroshima University in Japan. She started the first Family Nursing Study Group at Yamaguchi Prefectural Hospital in Japan, where she developed and refined an innovative model for teaching practicing nurses the skills of family nursing through live demonstration, supervision, case consultation, and mentoring. She published books about the application of the Calgary Family Assessment and Intervention Models, produced five educational videotapes, and published articles in academic journals. Her current research focuses on caring for families with chronic illness and examining health care delivery systems. Dr. Moriyama has been a board member of the Japanese Society of Health Support Science, the Disease Management Association of Japan, Japan Society of Health Care Administration, and the Japanese Association for Research in Family Nursing (JARFN). She chaired the Tenth International Family Nursing Conference, June 24–27, 2011, hosted by JARFN in Kyoto, Japan (< http://www.ifnc2011.org/> ). Three months before the conference was scheduled, Japan experienced a devastating earthquake and Dr. Moriyama provided competent, stabilizing leadership to ensure that the international meeting was a successful and well-organized event. The conference theme was “ Making Family Visible: From Knowledge Building to Knowledge Translation.” In 2005, Dr. Moriyama was awarded an Innovative Contribution to Family Nursing Award by the J ournal of Family Nursing for her outstanding entrepreneurial and energetic leadership of family nursing in Japan.

2910_Ch10_253-292 06/01/15 12:27 PM Page 266

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Sarah worries about John’s asthma and is fearful about his respiratory problems. She knows he takes his medicine and wants him to quit smoking. She worries what life would be like without him. She is nurturing and protective. Adam and Amanda see their father as the family protector. This family has health routines around self-care, safety, family care, mental health behaviors, family member caregiving, and illness care (Denham, 2003).

When nurses think family, they get to know families as unique social groups. They iden- tify ways members care for one another. Once we learn about the May family it is impor- tant to understand the family unit and individuals. If you were assigned to their care, how might you consider the entire family unit’s health? What strengths do you see? Are there areas of concern? What would a family-focused nurse notice and address?

Ideas of race, ethnicity, religion, culture, and education are not discussed in this case, but they might need attention in acute care. An interpreter may be needed if another language were spoken or a person were deaf. If a religion required special dietary practices, the nurse needs to know. Education level may require adjustments in communication, printed and verbal. Questions about work, school, community support, and resources might be appropriate. Learning about the family provides the nurse with a wealth of information to guide nursing actions.

Case Study Phase II: Acute Illness Requires Hospitalization

Sarah leaves for work before John and takes their children to school. Sarah receives a call from her husband, “I think you should come home. I stayed home from work today because I was feeling worse. I am feeling like I can’t catch my breath.” John is recalling his father’s death and is frightened, but does not tell her. Sarah says she will be there soon. She arranges to leave her class with a substitute teacher and rushes home. John has been taking antibiotics for the last 5 days. His temperature is rising and he is having an increased short- ness of breath. Sarah phones the physician when she arrives home and describes his condition. Sarah is advised to take him to the emergency department. John says, “Don’t worry I will be okay,” but he is anxious.

As they drive to the hospital little is said. John is having difficulty breathing and seems restless. When they arrive, Sarah is told to sit in the waiting room while he gets settled and the admission is completed. John is frightened, but says nothing. He waits in the examina- tion area alone and wonders: What is wrong with me? What will happen? Why can’t Sarah stay with me? What happened at the business meeting this morning? What will my children do if something happens?

Sarah sits in the waiting area. She thinks: I have information they need about John’s medication, his history of hypertension, and his family history of asthma. What is happen- ing? I am afraid. I need to arrange for Adam and Amanda to get to their sporting events this evening. I hope my students are okay with the substitute teacher. Why is no one telling me what is going on? I should be in there with John—why won’t they let me?

Sarah feels very anxious. She is thinking about John’s father, Joe, and his death at a young age. She questions: How would I manage without John? Should I call Adam and Amanda and tell them what is happening? What will I tell them? Yet, she sits silent as she waits to be invited into the room. After what seems like forever, Sarah asks the receptionist when she can see her husband. Finally, she is ushered to the room. Sarah looks at John with fear, but remains silent. Sarah asks the nurse, “What is wrong with my husband? Do I need to call my children?”

As the nurse leaves the room, she states, “The doctor will be here shortly to speak with you.” John says he feels worse. Sarah says little because his shortness of breath seems

CHAPTER 10 ● Family-Focused Care in Acute Illness 267

2910_Ch10_253-292 06/01/15 12:27 PM Page 267

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

worse. Sarah waits, holds his hand, and thinks about his condition last week. She wonders if she should have done something. Should she have acted sooner? She thinks about her son’s and daughter’s hockey games tonight. John said he had an important meeting at work. Why did he not get better with the antibiotics? Why is he so short of breath? Endless ques- tions, fear, and anxiety overcome Sarah and John.

The physician finally arrives. John has been there a long time. Some tests are done and he is admitted to a medical-surgical floor. Sarah is grateful that the nurse asks her to stay in the room as he is settled. The nurse introduces herself, explains the plans of care for the diagnosis of pneumonia, and collects contact information from Sarah.

Case Application: Stress, Uncertainty, and Suffering With Acute Illness Hospitalization

The hospital environment and the hospitalization of a family member bring fear of the unknown, the stress of interrupted family activities, and an uncertain future that create emotional tensions for family members. Families often experience a sense of helplessness dur- ing acute care for a member and thoughts of losing the individual make them feel vulnerable. When families understand events they are reassured and less anxious. Nurses who think family explain purposes of equipment and treatments and answer questions. The nurse’s deliberate actions to answer questions increase the family member’s sense of control and gave her a sense of empowerment, the process of developing competence and a capacity to solve problems (Persily & Hildebrandt, 2008). Nurses in acute care settings know some usual treat- ments for particular diagnoses and anticipate predictable family questions. These nurses describe what will or might happen so that families are prepared and can act proactively.

Providing families with information, familiarizing them with environments, answering questions, and explaining roles and plans create trust and help build relationships (Svavars- dottir et al., 2012; Wright & Leahey, 2013). For instance, it helps to explain that the beeping of the intravenous equipment does not have the same meaning as the oximetry alarm. This helps family members understand that nurses respond to alarms with different levels of urgency. If a procedure is taking longer than expected, the family needs explanations so they don’t think a complication has developed. For instance, including Sarah in the care helps establish a trusting therapeutic relationship and allows opportunities for Sarah to share im- portant information she may have that is relevant to John’s care. Nurses anticipate a family’s concern and work to allay some of the usual family experiences with a hospitalization.

Family and persons with acute needs experience stress, uncertainty, and suffering during hospitalization (Van Horn & Kautz, 2007) and family members are often excluded from the care, creating additional distress (Hardin, 2012; Vandall-Walker & Clark, 2011). Reflect on this case from Sarah’s point of view. Sarah had information that could be useful to the health care team. The separation during the admission caused some additional distress. Sarah was excluded. She might think the nurse uncaring and this decreases trust. The nurse missed an opportunity to develop a connecting relationship with this family by not providing introductions. The emergency department nurse failed to acknowledge Sarah’s anxiety about John’s condition. The unfamiliar setting and uncertainty about what was happening left many unanswered questions. This nurse could provide support by explaining what would happen and orienting them to the environment. Waiting for information with no updates increased Sarah’s stress and limited her ability to make plans for her children’s needs.

The nurse in the medical-surgical unit appears sensitive to family needs possibly because she is familiar with the evidence that suggests nurses can support families, assist them with stress, reduce uncertainty, and soften suffering experiences (Chesla, 2010; Davidson,

268 CHAPTER 10 ● Family-Focused Care in Acute Illness

2910_Ch10_253-292 06/01/15 12:27 PM Page 268

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

2009; Davidson et al., 2012; Eggenberger & Nelms, 2007; Hardin, 2012; Leahey & Svavarsdottir, 2009; Mitchell, Cahboyer, Burmeister, & Foster, 2009; Svavarsdottir et al., 2012; Wright, 2008). Individual-nurse-family interactions during acute care build connect- ing relationships and provide critical interventions that influence individual health and family unit (Bell, 2011; Svavarsdottir et al., 2012). Figure 10.1 depicts relationships among family needs, nursing actions, and care outcomes.

Case Study Phase III: Family Assessment and Communication

The nurse on the medical-surgical unit asks if Sarah and John would assist her in col- lecting information about the family. The nurse gathers the family together to collect family assessment data. The nurse generates a genogram, ecomap, attachment diagram, and circular communication pattern diagram to collect family assessment data about family illnesses, member relationships, and family communication patterns (Wright & Leahey, 2013). The nurse then moves to therapeutic questioning about primary concerns at this time. The nurse uses questions to collect family information: Tell me about the most difficult aspect of this illness for your family? What would be the most useful in- formation for your family at this time? Tell me about concerns for your family? (Wright & Leahey, 2013). After the meeting, the nurse documents key information that is acces- sible to those caring for John and Sarah. In the acute care setting the nurse may use a brief assessment to document essential data of family structure and interactions and then further assess over time. (Université de Montreal, 2000).

Case Application: Family Assessment, Communication, and Documentation

Sarah is relieved that all contact and pertinent information is available to the health care team. Some units in the acute care setting may document family information on white boards, charts, or the electronic health record so that it is available for other health care providers. With multiple care providers and potential transfer to different care units, it is imperative for nurses not only to conduct family assessments early during admission, but also to document changes that occur. Assessment is an initial step to gain insight about unique family needs. As time goes by, note any other important information about family life, needs, and roles. Information documented about family care decisions is important and can promote coordinated care. Sharing information among the variety of caregivers over a 24-hour period or with the new staff when transfers to different units occur helps family members manage the stress of a transfer.

In the acute care setting family assessment that begins with a family meeting may provide the nurses with the opportunity to develop nurse-family relationships and gather necessary information to provide quality family-focused care. When family meetings are conducted on a consistent basis, the information obtained during the family meeting may provide the nurse and other health care providers with data to understand the family experience, support family coping, and guide family decision making through various acute care tran- sitions (Khalaila, 2014; Nelms & Eggenberger, 2010). Family assessment was previously addressed in Chapter 5 of this textbook and family meetings to facilitate family assessment are explored further in Chapter 14.

Family-focused care can occur in short time periods; even brief moments can offer valued communication (Martinez et al., 2007). Thinking family means introducing yourself as

CHAPTER 10 ● Family-Focused Care in Acute Illness 269

2910_Ch10_253-292 06/01/15 12:27 PM Page 269

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

new persons arrive in a room. Examples could include: “Hello. My name is Julie Jones and I am caring for John today. Would you share your name and relationship to John? I will check his blood pressure, then we can talk about what is going on.” Recognize and commend the family for positive actions. An approach could be “You are doing a good job being here for your husband during this time.” Praise can help family endure some strains and reinforces positive actions. Family members need to be encouraged. The 15-minute family interview (Wright & Leahey, 2009) and brief therapeutic conversations have been implemented in a variety of hospital units with positive outcomes (Benzein & Saveman, 2008; Martinez et al., 2007; Svavarsdottir & Jonsdottir, 2011; Svavarsdottir et al., 2012).

Open-ended questions facilitate explanations, facts, thoughts, and emotions. The Calgary Family Intervention Model describes linear intervention questions that inform a nurse about what members perceive as needs (Wright & Leahey, 2013). This model also includes circular questions in which a cycle of dialogue is used to facilitate change. These questions can focus on relationships and beliefs or uncover explanations. A circular question could be aimed at explanation, such as, “What has happened to your family since this illness?” Questions often focus on beliefs about the acute illness such as prognosis and treatment plans, spirituality, control, and family member roles (Wright & Bell, 2009). Nurses can ask: “Who in your family is most affected by this illness? How is this hospitalization affecting your family?”

An individual-nurse-family dialogue is purposeful and directs attention to concerns with the intent of alleviating suffering (Tapp, 2001). Many will readily share their story if given the chance. Saying “Tell me your biggest concern since you have been here” will help a nurse address the family’s distress. When families believe they are heard, they will likely see the nurse as genuinely concerned. Every family interaction is an opportunity for the nurse to learn and address unique needs. Box 10.5 describes a practice situation where a nurse ad- dresses the concerns of the individual with the illness and the family member. Use the ques- tions to reflect on nurse-family-individual communication that is needed to ease distress.

Case Study Phase IV: Stress, Uncertainty, and Suffering in Deteriorating Condition

The next morning after Mr. May’s admission, the nurse completes the initial assessment and greets John. The nurse observes John is dyspneic, has a heart rate of 120 beats per minute,

270 CHAPTER 10 ● Family-Focused Care in Acute Illness

FIGURE 10-1 Relationships among family needs, nursing actions, and care outcomes.

2910_Ch10_253-292 06/01/15 12:27 PM Page 270

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

and a temperature of 102.6°F. Bilateral adventitious sounds in the lungs are heard. The physician is notified and orders received. An electrocardiogram shows ventricular tachycar- dia. Blood gases are drawn. Results indicate hypoxia, hypercarbia, and acidosis. John’s symptoms show increasing respiratory failure. The physician orders John’s immediate trans- fer to the intensive care unit (ICU).

John’s nurse contacts Sarah to tell of John’s transfer and describes the reasons. Sarah had gone home late last night to be with her children. She had arranged to take the next few days off from work and made transportation arrangements for the children. She had explained to them what was happening and tried to answer questions. They are frightened and wanted to stay home from school and go to the hospital with her. She insisted that they needed to keep up with their classes. Adam and Amanda think they should be at the hospital, but respect their mother’s request. Sarah called John’s family last night and told them he was hospitalized.

After the phone call from the hospital staff, Sarah immediately left home. She arrives at the ICU as the nurses are completing John’s transfer assessment. A nurse asks her to sit in the waiting room until they are finished. Sarah’s fear escalates. She thinks: What are they doing? Why has he been transferred to the ICU? This must mean his condition is really bad. Why didn’t that nurse tell me anything? Sarah lets herself think the painful thought, does this mean he could die? Maybe I should have let Adam and Amanda stay home today.

CHAPTER 10 ● Family-Focused Care in Acute Illness 271

BOX 10-5

Family Circle

Maria Sanchez is a 78-year-old Hispanic woman hospitalized for hematuria of unknown origin. A diagnostic work-up is being completed. This is the first time Maria has been hospitalized, and her adult daughter has been at her bedside since she was admitted. For the last 24 hours Maria has become increasingly withdrawn and has been lying curled up in bed. Tom, Maria’s nurse, is thinking that she may be withdrawn because her arthritis is worse as she has not been taking her home remedy medications. Tom has been a nurse for more than 10 years and is viewed as competent by others. Tom notices that Maria has not changed position all morning and her lunch tray has not been touched. Tom figures that Maria is not able to fully comprehend the pain scale, because whenever he has asked her, she has consistently rated her pain at a 2 on the 0-to-10 scale. Maria has orders for ibuprofen and morphine when needed. Tom decides that he should give Maria the morphine to help get the pain under control so she can get up and moving. Maria’s daughter, Josephine, insists that her mother not take the morphine. Tom is thinking the daughter will eventually see the benefits of the morphine when her mother is feeling better and able to move around. He wants to give Maria the medicine.

Practice Q uestions:

● What should Tom do in this situation? ● If the Maria only reports a 2 on the pain scale, should Tom assume that something else is

going on? ● Should Tom give the ibuprofen first? ● Is it possible that Maria does not really understand the question or what is meant by a pain

scale?

Family-Focused Practice Q uestions:

● Josephine, does your mother speak and understand English? ● Maria, would it be okay if I had one of our staff interpreters help me better understand what is

happening with your pain? ● Maria and Josephine, I would like to get to know you better. Can you tell me more about what

happened at home before you came to the hospital? ● Maria and Josephine, I am wondering what questions you would like me to answer.

2910_Ch10_253-292 06/01/15 12:27 PM Page 271

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

She thinks, I need to call John’s mother. I promised to let her know if things changed. Sarah had told John’s older brother and younger sister about the hospitalization. She called her family as well. She had reassured everyone that things were under control and that they need not come because they live far away and have complicated lives. Now she worries that she did the wrong thing. Sarah did not want to upset them, but what if something is terribly wrong?

Although it seemed like hours, only 10 minutes passed before a nurse greeted Sarah: “My name is Julie. I am the registered nurse caring for your husband today. I will be with you and him. I want to explain what is happening and answer questions. This must be difficult for you.” The nurse asks Sarah to come with her to John’s room. She explains the equipment being used to monitor John. She points to a chair where Sarah can sit near her husband. The nurse explains that the doctor will be in later this morning and that a specialist has also been called to consult.

The nurse begins to develop a relationship with Sarah. She acknowledges the stress linked with this experience. The nurse explains that the ICU staff is here to provide the care needed. Sarah shares concerns about their children, “What shall I tell our children? Maybe I should notify John’s mother and his family.” Sarah wonders who else she needs to call. The nurse says, “This must be frightening.” The nurse asks other questions about her family and children, inquires about her work, and asks if she has other questions. Together they develop a plan related to communicating with the children and family members. The nurse tells Sarah to ask questions when things are unclear.

Case Application: Stress, Uncertainty, and Suffering With Deteriorating Condition

A change in the condition of an ill family member can magnify the distress and suffering of the family as they face daunting threats of an illness and environment with the unknowns and uncertainty of future outcomes. Nurses who reach out, include, welcome, comfort, and advocate are supportive, but those who fail to acknowledge, ex- clude, and limit their interactions add to family distress (Nelms & Eggenberger, 2010; Vandall-Walker & Clark, 2011). Family stress and uncertainty can be diminished through early and ongoing communication, supportive interactions, and collaborative partnerships (McMillan & Small, 2007). Nurses play crucial roles in helping a family endure difficult acute experiences and maintain a healthy family (Appleyard et al. 2000; Van Horn & Kautz, 2007).

Case Study Phase V: Family Presence During a Serious Illness

In the next 36 hours, John’s condition continues to deteriorate. Sarah has notified their ex- tended family and suggested that they should come. Sarah’s mother has arrived and is stay- ing at their home to help care for the children. John’s older brother is bringing his mother and they will arrive soon. John’s younger sister, a single parent, has decided she cannot leave her young children or job. This sister likes to be in charge and control things. She calls the ICU desk often to check on John’s condition and gets angry when they refuse to give information. She texts Sarah continually and wants to know what is happening. Sarah is guarded, watchful, and trying to protect John. Sarah’s suffering is evident to the ICU nursing staff. Sarah calls her mother to ask if she would take the car, pick up Adam and Amanda from school, and drive them to the hospital.

272 CHAPTER 10 ● Family-Focused Care in Acute Illness

2910_Ch10_253-292 06/01/15 12:27 PM Page 272

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Adam and Amanda were scared when their grandmother arrived at school. Adam asked many questions on the ride to the hospital. Amanda sat silently and looked out the window. The silence was heavy. When they arrive, John’s nurse takes a few minutes to speak with them before they go to his room. They barely hear what she says because of their anxiety. Finally, the children are allowed to see their father, but he barely acknowledges their pres- ence. Adam and Amanda spend about 5 minutes in the ICU room with their father and mother. The nurse explains some things about what is happening. Tears are streaming down Sarah’s cheeks. Adam is brave and asks, “Will my father be okay?’ The nurse re- sponds, “We are doing everything we can to help him. He needs to rest and give things time to work.” The nurse asks them if they have questions and tries to answer simply. She explains equipment to the children and helps them speak with their father. They return to the waiting area to sit with their grandmother and wait.

Sarah says, “I need to stay strong for them. They need me.” Sarah says to the nurses, “He seems to be getting worse, no matter what you do. I don’t know how much more we can take. I am not sure what to say when the children ask me if he will die.” John’s nurse realizes that Sarah is struggling with fears and asking difficult questions without answers. The nurse listens intently and tries to answer questions truthfully. The nurse uses caring and clinical judgments to communicate with Sarah.

John’s family and Sarah’s siblings arrive at the hospital and gather in the waiting room. Different family members are at John’s bedside around the clock. John’s brother is troubled by his sister as she is texting him with questions. John’s mother is overheard saying, “We need to transfer him to a different hospital because they are not doing enough here.” John’s older brother states, “John would not want all of these machines.” The extended family is large and takes up much of the space in the waiting area. Tensions are rising and some members seem at odds with others. More than 24 hours pass.

Some nurses welcome the family’s vigilance but others are troubled by their presence. Nurses’ statements include, “John’s family is always here. I wonder how we can offer more support. I am going to ask them to join me for a family conference to discuss what is hap- pening.” One nurse says, “John’s family just needs to go home and let us take care of him. They always want to be in the room when we have things to do. Go home, get some rest, and leave the caregiving to us.” Nurses who are not family focused often perceive the family as a barrier to care, rather than the partner.

John’s condition deteriorates to respiratory failure; the rapid response team is called, and eventually an intubation is required. One nurse tries to move Sarah and one of her siblings out of the ICU and into the waiting room despite their protests. Sarah states, “We must be here! We want John to know we are here!” A nurse responsible for the family dur- ing the procedure says, “I understand. You should be here if you think that is important.” She shows them a place to stand near the bedside and explains what is oc- curring as cardiopulmonary resuscitation begins.

John’s children have been talking with their grandmother in the waiting room. They make their way back into the ICU while the response team is in action. Amanda begins to cry and Adam stands at the doorway silently. One nurse asks the children to leave. Another nurse, the one that had spoken with them earlier, puts her arm around Amanda and talks to them. She explains what is happening. This nurse helps Sarah comfort her children and make a decision about their presence and observation of what is happening.

Case Application: Family Presence During Invasive Procedures

Families want to be vigilant and support their ill member, especially in the acute care setting (Dudley & Carr, 2004; Vandall-Walker & Clark, 2011). Being together as a family often

CHAPTER 10 ● Family-Focused Care in Acute Illness 273

2910_Ch10_253-292 06/01/15 12:27 PM Page 273

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

decreases distress of the family and supports the ill member of the family. Nurses who think family support the family’s presence during invasive intubation procedure and explain what they observe. A family-focused care setting has policies to support family presence that are beneficial to families (Abraham & Moretz, 2012; Doolin, Quinn, Bryant, Lyons, & Kleinpell, 2011). Current research indicates that most families want to be present during treatments, invasive procedures, and cardiopulmonary resuscitation (CPR) (Davidson et al., 2007). Box 10.6 provides selected evidence related to family presence. Additional information about the importance of family presence is provided in Chapter 9.

Many family members want the option to stay with their member during resuscitation efforts, and current practice has turned to family inclusion (American Association of Critical Care Nurses, 2010; Emergency Nurses Association, 2009, 2010). Family members present during cardiopulmonary resuscitation report that they would do so again because it helps remove doubts and eases distress (American Association of Critical Care Nurses,

274 CHAPTER 10 ● Family-Focused Care in Acute Illness

BOX 10-6

Perceived Benefits and Barriers of Family Presence

Perceived Benefits of Family Presence From the Family Perspective

● Reduces fear and anxiety among family members. ● Dispels dread of the unknown and guilt with not being present at the bedside. ● Enhances feelings of usefulness (e.g., providing information to health care team, offering

support and comfort to patient). ● Supports the family feelings of needing to protect and being connected to their family member. ● Fosters the appreciation for the efforts of the health care team to ensure “ everything possible”

is being done and allays some doubts. ● Allows opportunity to speak with patient and possibly say thoughts and good-byes.

Perceived Barriers to Family Presence From Health Care Providers’ Perspective

● Fears that distraught family members may distract the staff from providing care needed by the ill patient.

● Concerns that family members’ distress would hamper their performance and increase own emotional response.

● Increased risk of litigation by family members. ● Lack of space in the room and lack of staff to provide support for family members. ● Rights of confidentiality and privacy of patient violated. ● Experience may be too traumatic for family and have lasting ill effects.

Perceived Benefits of Family Presence From Health Care Providers’ Perspective

● Reminds staff to care for a patient with privacy, dignity, and respect. ● Prompts staff to recall the patient is a person who is a member of a family. ● Encourages professional behavior and holistic care to a patient during a crisis situation. ● Allows a family member to recognize staff’s efforts to care for the patient and advocate for the

patient. ● Offers the nurse an opportunity to educate the family, support the family, and reaffirm the role

of the family as a support network.

Source: Adapted from American Association of Critical Care Nurses (2010). AACN Practice Alert: Family presence during resuscitation and invasive procedures. Retrieved May 17, 2012 from http://www.aacn.org/WD/Practice/ Docs/PracticeAlerts/Family% 20Presence% 2004-2010% 20final.pdf; Duran, C. R., Oman, K. S., Abel, J. J., Koziel, V. M., & Szymanski, D. (2007). Attitudes toward and beliefs about family presence: A survey of healthcare providers, patients’ families, and patients. American J ournal of Critical Care, 1 6 (3), 270–282; Halm, M. (2005). Family presence during resuscitation: A critical review of the literature. American J ournal of Critical Care, 1 4 (6), 494–512.

2910_Ch10_253-292 06/01/15 12:27 PM Page 274

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

2010; Duran, Oman, Jordan, Koziel, & Szymanski, 2007; Meyers, Eichhorn, Guzzetta, Clark, & Taliaferro, 2000). Encouraging family presence can increase family satisfaction with the health care system with this practice (American Association of Critical Care Nurses, 2011; Davidson et al., 2007; Roberti & Fitzpatrick, 2010). Families and health professionals report the benefit of family presence. Yet some professionals continue to be concerned that family presence is too anxiety-provoking for families; research has not supported these per- ceptions (Duran et al., 2007; Emergency Nurses Association, 2010; Halm, 2005). Research suggests that acute care policies often do not support the evidence (American Association of Critical Care Nurses, 2011; Emergency Nurses Association, 2009). A nurse who thinks family understands practice guidelines related to family member presence and supports family visitation and presence and works to develop policies that advocate for families (American Association of Critical Care Nurses, 2011; Davidson et al., 2007; Emergency Nurses Association, 2009).

Research findings suggest children and families need to be together during stress and crises, and recommendations suggest that nurses should include them in acute care of adults (Clarke & Harrison, 2001; Kean, 2010). Helping parents decide what information to share and in- cluding them during acute care is important (Kean, 2010; Knutsson, Samuelsson, Hellstrom, & Berghbom, 2008). Yet, resources for children visiting adults during acute care and critical illness are limited. Nurses who think family advocate for children and discuss the best ways to include them in care. A family nurse prepares a child for the acute setting, communicates in a developmentally appropriate way, and provides a child-friendly environment.

Case Study Phase VI: Information Exchange and Family Conflicts

John’s condition remains unstable. The family has difficulties communicating about future plans. Tension builds as members share their beliefs. Sarah thinks she understands her hus- band’s wishes about quality of life and use of extraordinary measures. She has spoken with the physician and has a grasp of the current state of John’s condition and the potential out- comes. John’s brother says, “He said he never wanted to live on machines.” With further discussion the conflict increases and soon the family sits in separate parts of the waiting room in silence. Sarah comments to the nurse, “We have always been a strong family that could talk about everything. I just don’t understand what has happened to us. We seem to be in such different places.”

The nurse decides to work toward arranging a family meeting in which the family can explore their thinking and move toward decisions. She wants to encourage understanding, identify strengths to commend, and find ways to build consensus. The nurse says to Sarah, “A family meeting can help share thinking and beliefs. It is a way to provide additional in- formation to the whole family and offer support to move forward. I would be there to help your family. Would this be useful for you and your family at this time?”

Case Application: Family Decision Making

Numerous decisions need to be made during an illness and many require family involvement. Decision making may focus on issues related to treatment choices; deciding what, where, and when to obtain health services; and decisions about withdrawal of life support and organ donation (Jacobowski, Girard, Mulder, & Wesley, 2010). Even when individuals discuss pref- erences or provide written documentation about their choices, they often need support and guidance to navigate the distresses associated with the decision (Luce & White, 2007;

CHAPTER 10 ● Family-Focused Care in Acute Illness 275

2910_Ch10_253-292 06/01/15 12:27 PM Page 275

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Wiegand, 2008). Nurses assist by providing complex information in simple terms, using drawings to explain and clarifying goals. Decision points occur throughout an illness with many opportunities for nurses to guide and partner with family members (Bakitas, Kryworuchko, Matlock, & Volandes, 2011; McBride Robichaux & Clark, 2006) (Box 10.7).

Nurses who think family can assist at various decision points by providing information and clarifying possible outcomes of a selected path, or they can discuss what could occur if no treatment is obtained. Yet, beliefs of family members related to decisions and how to care for their ill family member may differ. Usual communication processes may be dis- rupted and open expression of emotions in caring ways may be challenging for some family members. Nurses are often present during these difficult times and family-focused nurses remain with the family to help communication continue and be sure all voices are heard (Warnock et al., 2010). Best practice models include informed choices, shared decision making, support for decisions, and dialogue (Bakitas et al., 2011).

Yet, in the acute care setting some myths and misunderstandings about the Health In- surance Portability and Accountability Act (HIPAA) exist and hamper nurse-family com- munication. In 1996, HIPAA regulations were implemented to protect personal health information, ensure that individuals had access to health insurance, and streamline some administration processes. HIPAA was never intended to dictate policies that hamper family assessment, prevent family inclusion, or withhold necessary information from family mem- bers. Individuals can give permission for information sharing. If the patient is incapacitated, a health care provider may share information with family, friends, or others as long as pro- fessional judgment is used to determine what is in the best interest of the person (Office of Civil Rights, Department of Health and Human Services, 2012).

Case Study Phase VII: Transfers in Acute Care Settings and Discharge to Home

After several days in the ICU, John is finally able to breathe on this own. The weaning process is frightening, but the nurse provides continuous information, shares specific plans,

276 CHAPTER 10 ● Family-Focused Care in Acute Illness

BOX 10-7

Families’ Needs Related to Decision Mak ing in Acute Care

Decision making can be a challenging task during an inpatient admission for an acute care concern. Here are some features of nursing care that family members would likely find helpful when a member has an acute condition needing attention.

● Families need a nurse who develops trusted relationships with them so they can partner in decision making.

● Families want a nurse who guides them in supporting the family member with an illness and helping them make decisions about their role.

● Families value a nurse advocating for them throughout hospitalization. ● Families need a nurse to provide information that is easy to understand on a consistent basis. ● Families want a nurse who helps them balance the needs of multiple family members. ● Families need health care providers to give them time to make decisions. ● Families appreciate guidance at various decision points. ● Families need a nurse who helps them plan for transitions. ● Families value guidance in creating the opportunities for shared decision making.

2910_Ch10_253-292 06/01/15 12:27 PM Page 276

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

and interprets information. The nurse tells Sarah and John, “Our plans are to adjust the settings on the machine and watch how the changes are tolerated. I will stay close to watch the machinery and John. Let me know if you question anything you see or hear.” The nurse continually reassures them that John is improving. She gives specific information and ex- plains steps in the progression of care. The nurse supports Sarah’s decision to remain vig- ilant and stay near her husband. Each time John is assessed, the nurse shares the meaning of what is found with Sarah. When Amanda and Adam visit again with Sarah’s mother, the nurse speaks to them, answers questions, and explains in words they understand.

With time, John is transferred back to the medical floor. He expresses his sense of relief with improvement, “I am so glad to be better, maybe I can get some sleep.” Sarah is anxious about the transfer. She thinks, Will these nurses watch John closely? I trusted those nurses in the ICU; they were so helpful. Now I have to get acquainted with these new nurses. They do not seem as visible as those in ICU. No one has spoken to me yet and the transfer happened an hour ago.

The nurses on the medical floor are prepared for Sarah’s anxiety with the transfer. In a short time, the nurse introduces herself and explains plans. She says, “I am the nurse caring for John. Sometimes family members worry what will happen when their loved one moves out of the ICU into a unit like this. What questions do you have that I can answer right now?” The nurse reassures Sarah, “I plan to keep my eyes on John, check his progress often, and keep you informed. Let me be certain we have your family contact information. If it is okay, I would like to briefly review the genogram we have in John’s records to be sure that I have a good understanding of your family.”

As days go by, John’s condition continues to improve and he is soon ready for discharge. Before that time, nurses have spent time with John and Sarah reviewing purposes of med- ications and side effects. They have explained about asthma risks and spoken about pre- vention. They spoke about home environments and irritants that trigger asthma. Tobacco cessation was explained and information about local resources provided. Also, the impor- tance of balancing work, family roles, and health was discussed. The concerns of the chil- dren have been explored.

Sarah says, “We are happy to go home. Nurses have been so good about teaching us, answering questions, and taking care of our needs.” John’s home plan calls for several days of rest and then work from home for 2 weeks before returning to his office. Sarah says, “I am glad we have clear instructions written so we understand. We know what to do at home.” The nurse talks with Sarah about balancing personal care needs with those of the family. Sarah replies, “We will be so glad to have John home. We know what to watch for and how to create some new routines for healthier lives.”

Case Application: Preparing for Transfers Within and Discharge From Acute Care Setting

Transfer and discharge planning occur throughout an acute care stay. As transfers between units occur, the family nurse addresses the stress that can occur with transfers and need for coordinated care. Communication with health care providers about family needs and past experiences is important. In the May family, nurses collaborated with others to ensure that discussions and issues were not overlooked. As the discharge was planned, needs of the entire family were considered. As Sarah drove John home, they and the children dis- cussed their experience and their feelings of relief that John was returning to health as well as some of their fears and concerns. The nurse had prepared them for stress and uncertainty of returning to roles and responsibilities. The May family also discussed the ways they had been treated during their acute care experiences.

CHAPTER 10 ● Family-Focused Care in Acute Illness 277

2910_Ch10_253-292 06/01/15 12:27 PM Page 277

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Delivery of Family-Focused Care: Environmental Factors in Acute Care Setting

Economic and social policies influence ways nursing care is delivered. The public is more selective about where to receive care, but health insurance plans, preferred providers, and cost of co-payments drive some decisions. People expect high-quality nursing care (Box 10.8). Health care consumers make decisions based on published outcomes, satis- faction scores, and provider rankings. The Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) Survey is one such publication. This survey is man- dated by the Centers for Medicare and Medicaid Services (CMS) and hospital reimburse- ment is linked to the HCAHPS scores (CMS.gov). Publicly reported data guides individuals concerning where to seek care.

Quality measures are important ways to evaluate nursing actions. The quality of nurse- patient communication and satisfaction with health care experiences are areas measured by acute care institutions. The acute care environment is a complex system in which family care can thrive or barriers can prevent care delivery (Table 10.5). Take time to consider environmental factors that can be viewed as supportive and barriers to individuals with an acute illness and their families.

Moving Family-Focused Care in Acute Care Settings Forward

Individual-nurse-family collaborations are used to manage the barriers and obstacles that prevent safe quality care. Collaborations are grounded in trusting relationships that ac- knowledge, affirm, and support family units during acute care. Nurses who think family work with supervisors and administrators to identify best ways to satisfy family needs, lead family meetings, and conduct bedside reports, family rounding, and family interven- tions. Several current initiatives in nursing practice aim to move family care forward.

278 CHAPTER 10 ● Family-Focused Care in Acute Illness

BOX 10-8

Elements of a Hospitaliz ation That Improve Family Care

The Institute for Healthcare Improvement (2011) recently published a White Paper compiling evidence to advance recommendations that are most apt to improve family experiences during hospitalization and increase patient response scores to the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey question related to willingness to recommend the hospital to others. These recommendations are identified here:

● Leadership with a focus on the family ● Engagement of staff and providers in the values of family-focused care ● Respectful partnerships with patients and family members ● Access to care without long and unreasonable delay ● Coordinated evidence-based care shared by all team members including patient

and family

Source: Adapted from Balik, B., Conway, J., Z ipperer, L., & Watson, J. (2011). Achieving an ex ceptional patient and family ex perience of inpatient hospital care. IHI Innovation Series White Paper. Cambridge, MA: Institute for Healthcare Improvement. Retrieved from www.IHI.org

2910_Ch10_253-292 06/01/15 12:27 PM Page 278

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 10 ● Family-Focused Care in Acute Illness 279

TABLE 10 -5 Supportive Environmental Factors and Barriers to Family -Focused Care

ENVIRONMENTAL FACTORS TO SUPPORT FAMILY-FOCUSED CARE

Leadership, organization, and culture are focused on family care that is publicly verifiable and rewarded.

Family is included in measurement, learning, and improvement in practice with family feedback as a routine practice.

Family members are treated as partners in care and the information they offer is perceived as useful and important for planning safe and quality care.

Staff is committed to the shared values of family- focused care.

Staff experiences in working with families increase their personal satisfaction levels.

Teamwork is essential with staff being recruited for the values they display regarding the mission of family-focused care.

All care situations are anchored in respectful partnerships with family members.

Care is based on a customized and interdisciplinary care plan with family members consistently educated.

Physical environment promotes healing (9 p.m. lights are dimmed, door to patient room is closed, phones and pagers are on vibrate, use of ear plugs, portable white noise machines for room, face masks, blinds block out light). Manage noise in environment as much as possible. However, family’s presence is supported.

Physical environment meets the nutritional, sleep, exercise, and routine needs of family members.

Policies support engagement by family members (i.e., family visiting policies enable family to spend the night in comfort and include children as visitors).

Continual information exchange with the family that is understandable and targeted toward educational level of family members.

Honest and open approach to providing information that is truthful.

Ongoing and consistent family meetings to dialogue, explore, and address concerns.

Family members are able to retain family relationships and remain close to family members by participating in care routines comfortable for them and the hospitalized individual.

ENVIRONMENTAL BARRIERS TO FAMILY- FOCUSED CARE

Nurses with heavy workloads and high stress levels may convey their stress and create inabilities to partner with families (Å stedt-K urki, Paavilainen, Tammentie, & Paunonen-Ilmonen, 2001).

Families are often largely unheard and unrecognized.

Family members are viewed as visitors.

Staff is not educated or prepared to provide or value family-focused care.

Staff members lack work satisfaction with families.

Cooperation and equality among team members are inconsistent related to family care.

Limited appreciation or understanding of family experience with a hospitalization.

Limited documentation of family involvement in the electronic health record or other clinical documentation systems used.

The architectural hospital design is not conducive to family participation in care; stress of the noise or lighting (i.e., window blinds not closed, overhead lights on, monitoring equipment screens face patient, door remains open to hallway).

Visiting policies are strictly adhered to and family members experience discomfort when they are “ outside the policy” (e.g., staying after hours).

Information is not tailored to the health literacy needs of family members and is inconsistently provided by clinicians.

Limited information exchanges and family meetings only during times of crisis.

Staff members fail to identify what parts of patient care family members feel comfortable providing, or wish to provide, and what parts they prefer the staff to complete.

C o n t in u e d

2910_Ch10_253-292 06/01/15 12:27 PM Page 279

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

280 CHAPTER 10 ● Family-Focused Care in Acute Illness

TABLE 10 -5 Supportive Environmental Factors and Barriers to Family -Focused Care— cont’ d

ENVIRONMENTAL FACTORS TO SUPPORT FAMILY-FOCUSED CARE

Family members share their priorities and usual routines to assist the health care team in focusing on the family’s perceptions of priorities of care rather than only those of the health care team.

Family members need to be comfortable in the hospital environment to reduce distress and suffering (e.g., massage, music, aromatherapy, art therapy, pet therapy, gardens and soothing sound of water, nutritional support).

Q uestions by family members are encouraged and answered regularly with information given in clear language or with use of drawing pictures to illustrate.

Family decisions are honored and families participate in decision making to the level they feel comfortable.

Family members feel cared for, respected, welcome, and know that help will be given when it is needed.

Family advisory councils actively participate with hospital administrators and nursing staff to improve family care experiences.

Innovative programs are used to educate staff about how to deliver family-focused care.

Peer recognition programs that honor providers who embrace the values of family-focused care (selected by peers and by family members in follow-up surveys).

The nursing team uses hourly rounding to ensure that needs for each patient and family are met.

Family care rounding is regularly conducted by physicians/interdisciplinary team and nurses at prescheduled times so family members can be included in decision making about care management.

Communication mnemonics used for all staff to deliver consistent messages and be proactive in communication approaches (e.g., AIDET: acknowledge, introduce, duration, explain, and thank).

Regular and consistent family meetings bring family members together with nursing staff to discuss experiences.

ENVIRONMENTAL BARRIERS TO FAMILY- FOCUSED CARE

Nurses disregard family routines, such as when someone likes to take a shower or if a family member always cares for someone at home.

Hospital policy does not allow for complementary therapy services nor does it foster innovative and cost-effective approaches to supporting family comfort and usual household routines while in the hospital.

Family questions go unanswered unless family clearly seeks information.

Reluctance of health care providers to engage families in decision making.

Family members feel anxious because they feel largely ignored.

Hospital staff and nurses make decisions without consideration of the family experience during hospitalization in the acute care settings.

Programs assume that nurses already know about family care and fail to offer continuing education in these areas.

No recognition is given to those who address family care needs.

Hourly rounding is conducted by staff without training about ways to interact with family members.

Family care or rounding policies are not in place and family members are not included in care management or decision-making activities.

Communication format not formalized within the setting, leaving opportunity for inadequate and inconsistent messages.

Family information needs are not clearly met through structured communication programs and family needs are inconsistently addressed during hospitalization.

2910_Ch10_253-292 06/01/15 12:27 PM Page 280

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Family Policies and V isitation

Policies about family visitation in acute care settings have been changing in recent years. Some hospitals are viewing families as a respected part of the health care team, rather than merely seeing them as visitors (Leape et al., 2009). This changed perspective is based on research findings that indicate that when families’ partnership in care management of acute illness is improved, continuity of care is enhanced, and hospital readmissions are reduced (Bauer et al., 2009). These mutually important outcomes resulted in improved satisfaction and reduced medical errors (Wiggins, 2008). Unrestricted family visitation increases patient comfort and satisfaction for the hospitalized person, and family members report increased satisfaction, decreased anxiety and uncertainty, improved communication, and better patient/family teaching (American Association of Critical Care Nurses, 2011; Vandall- Walker & Clark, 2011).

The Institute for Patient- and Family-Centered Care has formulated a set of guidelines to change hospital visiting policies and practices. The core concepts of these guidelines are respect and dignity, information sharing, participation, and collaboration (Johnson et al., 2008). However, nurses continue to report inconsistent visitation policies, and hospital units continue to restrict the patient’s access to designated support persons during acute care experiences, especially serious ones (American Association of Critical Care Nurses, 2010; Davidson et al., 2007; Vandall-Walker & Clark, 2011). Research evidence supports the idea that family and other care partners should be allowed to visit 24 hours a day, even during serious illness.

Family Presence During Invasive Procedures and Cardiopulmonary Resuscitation

Nurses identify needs for policies, procedures, and educational programs that support family-focused care during crisis events such as cardiopulmonary resuscitation and in- vasive procedures (Halm, 2005). Although many nursing organizations have taken bold moves to support family presence, more actions are still needed to be sure practice is based on evidence. In 1993, the Emergency Nurses Association (ENA) adopted a reso- lution to support family presence during invasive procedures and resuscitation. In 1994, their first position statement was completed and a resource was developed to address family presence (ENA, 2009, 2010). Ideas about family presence have also been included in the American Heart Association (2005) guidelines for cardiopulmonary resuscitation. In 2010, the American Association of Critical Care Nurses (2010, 2011) published a practice alert that identifies the increasing evidence for the practice of family presence during resuscitation and invasive procedures. The vision of the National Hospice and Palliative Care Organization (2008) clearly focuses on including families and a position statement on palliative care is also directed toward standards of practice that meet individual and family needs.

Family Participation in Rounds and Change of Shift

Family participation in interdisciplinary rounds and bedside change-of-shift reports has gained momentum in recent years. Communication with families during pediatric and end- of-life care is a common nursing practice (Committee on Hospital Care, 2003). However, the routine incorporation of families into regular rounds and change-of-shift reports on all hospital units is only beginning. Nurses need education and practice sessions to make

CHAPTER 10 ● Family-Focused Care in Acute Illness 281

2910_Ch10_253-292 06/01/15 12:27 PM Page 281

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

family participation in rounds and shift reports effective and feasible (Anderson & Mangino, 2006; Santiago, Lazar, Depeng, & Burns, 2014). When rounds with families are available, it is useful to inform families about them in verbal and written formats. Some early findings suggest bedside rounds increase satisfaction with communication (Anderson & Mangino, 2006; Rappaport, Ketterer, Nilforoshan, & Sharif, 2012). Family participa- tion offers times for bidirectional communication and clarification of information (Davidson et al., 2007; Rappaport et al., 2012). More research is needed to fully under- stand the benefits of family participation in rounds in different areas of acute care (Jacobowski et al., 2010) and the most meaningful ways to include family in rounds. Family rounds can be implemented through various processes such as those suggested in Box 10.9.

Family Support Groups

In 2001, the Committee on Early Childhood, Adoption, and Dependent Care of the American Academy of Pediatrics clearly highlighted the need for family support pro- grams. Recommendations included needs to consider family significance, recognize the family as part of the community, and enhance their strengths. Family support sessions in adult acute care settings have now expanded to areas such as palliative care (Henriksson, Benzein, Ternestedt, & Andershed, 2011), family caregivers in mental health (Chien, Chan, Morrissey, & Thompson, 2005), and chronic illness (Munn-Giddings & McVicar, 2006) where research has provided positive results. Support groups can improve dissem- ination of clear information, offer support, reduce burdens, and increase abilities to manage stress and have the potential to increase communication between health care providers and family members, reduce uncertainty and family concerns, and help family

282 CHAPTER 10 ● Family-Focused Care in Acute Illness

BOX 10-9

Processes to Include in Family Rounds

The following items are ideas to consider when planning to include family rounds in daily nursing practice:

● Staff members are provided with written handouts and educational practice sessions prior to implementation of family rounds.

● Family rounds structure includes interdisciplinary team at the bedside with a number of family members.

● Family rounds occur daily. ● Nurse explains the family rounds to the family in verbal and written formats. ● Nurse helps to bring the family to the bedside. ● Interpreters are available when needed. ● Core physicians and providers provide a summary of the family member’s care needs for the

family using understandable language. ● Nurse provides pertinent information to the family and health care team. ● Family has the opportunity to ask questions. ● Follow-up family meetings are offered to provide additional support, answer additional

questions, and encourage communication among family members.

Source: Adapted from Anderson, C. D., & Mangino, R. R. (2006). Nurse shift report: Who says you can’t talk in front of the patient? Nursing Administration Q uarterly, 3 0 (2), 112–122; Jacobowski, N. L., Girard, T. D., Mulder, J. A., & Wesley, E. (2010). Communication in critical care: Family rounds in the intensive care unit. American J ournal of Critical Care, 1 9 (5), 421–430; Rappaport, D. I., Ketterer, T. A., Nilforoshan, V., & Sharif, I. (2012). Family-centered rounds: Views of families, nurses, trainees, and attending physicians. Clinical Pediatrics, 5 1 (3), 260–266.

2910_Ch10_253-292 06/01/15 12:27 PM Page 282

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

members know that health professionals understand (Sabo et al., 1989; Sacco et al., 2009). Technology can also facilitate online education and support systems for families (Xu et al., 2014). Family satisfaction may increase with regular involvement in support groups during and following an acute care experience. Nurses who think family can participate with their employing agencies to determine what support groups are most useful.

Family Advisory Councils

Family advisory councils being implemented in a variety of organizations to strengthen family care may help solidify family-focused care in the acute care setting (Halm, Sabo, & Rudiger, 2006). These councils engage acute care staff in family partnerships and provide a mechanism to improve care processes that help nurses better understand family needs. Inviting families to be family faculty is another useful tactic. Family members have devel- oped presentations for acute care staff on such topics as improving communication, healing partnerships, and family experiences. Family narratives have been shown to influence care (Children’s Hospital of Philadelphia, 2013).

Family-Nurse Meetings

Bringing families together as a group to talk about their experiences, beliefs, and thinking has been a successful strategy that provides insight and comfort (Cypress, 2011; Robinson & Wright, 1995). Family meetings have potential to decrease uncertainty and suffering (Nelms & Eggenberger, 2010), increase satisfaction (Alvarez & Kirby, 2006), and facilitate decision making (Wingate & Wiegand, 2008). Families report that these meetings help them better understand the struggles of other family members and establish trusting rela- tionships critical to quality care (Appleyard et al., 2000; Lynn-McHale & Deatrick, 2000; Nelms & Eggenberger, 2010). Inviting conversation during family meetings acknowledges families’ needs and offers intentional therapeutic conversation (Wright & Leahey, 2013). Family meetings can help identify specific concerns, manage stress, and gain understand- ings. Conducting family meetings at regularly scheduled times, rather than only during cri- sis decision points, has potential to offer an intervention that families and providers value (Hannon, O’Reilly, Bennett, Breen, & Lawlor, 2012).

Family Documentation w ith Electronic Records

Implementation of the electronic health record (EHR) has provided the opportunity for point-of-care information and the ability to access information promptly. Inclusion of family information is often an “add-on” to the patient record and it is only included if the nurse providing care views it as important. When assessment of family is not addressed in the standardized flow sheet generated by the EHR, it is unlikely that the nurse will document the family as part of the patient’s care system, rendering the family invisible. The EHR has had great benefit for health care institutions’ need to collect data and record outcomes. On the other side, its implementation has been shown to have limited usefulness in improving acute care nurses’ clinical judgment or improving team communication (Kelley, Brandon, & Docherty, 2011).

The EHR is a tool that will remain, so it is essential that nurses incorporate family in- formation in the chart. Investigators suggest that the EHR does not make the individual- family-nurse relationship visible or promote provider communication about those issues that matter the most to families, such as their involvement in care (de Ruiter, 2007, 2011).

CHAPTER 10 ● Family-Focused Care in Acute Illness 283

2910_Ch10_253-292 06/01/15 12:27 PM Page 283

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Regardless, if the standardized forms do not address the family, nurses can still describe family-related care in narrative notes or documentation. When documentation includes family assessment data and aspects of the family and illness experience, then it is most likely that the concerns of a family will be addressed.

Strategies to ensure that care remains family focused include the use of family stories, short narratives in which family experience is shared. For example, a family may provide daily updates, concerns, or questions. A social narrative to share their story with care providers could be useful. This intervention could capture family preferences, experiences, and needs. Family information that is part of a record could be viewed by those providing care and used to facilitate decision making and planning care strategies.

A Family-Focused Environment

The design and aesthetics of acute care hospitals in the United States include innovative col- ors, attractive lighting, prerecorded music, waterfalls, and healing gardens for viewing or walking. Such features have been demonstrated to positively affect patient outcomes (Center for Health Design, 2012; Ulrich et al., 2008). Innovative nurse-designed hospital work environments that improve efficiency and safety and add features that mitigate stress for patients and families are becoming more commonplace (Kreitzer & Zborowsky, 2009). Often these settings include private, single-bed hospital rooms with space for family mem- bers. Private rooms are more conducive to family involvement in patient care. Education centers, chapels, meditation areas, spaces for family members to meet and remain overnight, laundry areas, small kitchenettes, and in-room dining could be considerations. Furniture arrangements in waiting areas can facilitate privacy and socializing for family groups. Efforts to address hospital designs should consider needs of families because health care structures and environments can affect quality of care, satisfaction, and efficacy (Center for Health Design, 2012; Trochelman et al., 2012).

Chapter Summary

Whether it is a hospitalized child, adult, or older adult, each family presents with needs, strengths, and challenges that require attention and care during a distressing experience that affects the entire family. The stress and uncertainty of illness influence the entire fam- ily. Communication, roles, and the disruption of usual routines add to the distress of acute illness. Even if a family is not physically present, family members are important to the in- dividual’s health care outcomes. Nurses have pivotal roles in communicating with and com- forting family, advocating for decision-making processes, and reducing family suffering in acute illness. Despite the complex and hurried demands of acute care settings, family nurses connect with, advocate for, and respect all; they individualize care and partner with the family so they can cope with demands and support their ill family member. Nurses who think family intentionally practice with a focus on the individual with the illness and their family.

REFERENCES

Abate, F. R. (Ed.) (2002). Oxford American dictionary of current English. New York: Oxford University Press.

Abraham, M., & Moretz, J. G. (2012). Implementing patient- and family-centered care: Part 2— Understanding the challenges. Pediatric Nursing, 38(1), 44–47.

284 CHAPTER 10 ● Family-Focused Care in Acute Illness

2910_Ch10_253-292 06/01/15 12:27 PM Page 284

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Alvarez, G. F., & Kirby, A. S. (2006). The perspective of families of the critically ill patient: Their needs. Current Opinion in Critical Care, 12, 614–618.

American Academy of Pediatrics, Committee on Hospital Care. (2003). Family-centered care and the pediatrician’s role. Pediatrics, 112(3), 691–696.

American Association of Critical Care Nurses. (2010). AACN Practice Alert: Family presence during resuscitation and invasive procedures. Retrieved May 17, 2012 from http://www.aacn.org/ WD/Practice/Docs/PracticeAlerts/Family%20Presence%2004-2010%20final.pdf

American Association of Critical Care Nurses. (2011). AACN Practice Alert: Family visitation in the adult ICU. Retrieved May 16, 2012 from http://www.aacn.org/WD/practice/docs/practicealerts/ family-visitation-adult-icu-practicealert.pdf

American Heart Association. (2005). 2005 American Heart Association Guidelines for Cardiopul- monary Resuscitation and Emergency Cardiovascular Care. Circulation, 112, IV1–203.

Anderson, C. D., & Mangino, R. R. (2006). Nurse shift report: Who says you can’t talk in front of the patient? Nursing Administration Quarterly, 30(2), 112–122.

Appleyard, M. E., Gavaghan, S. R., Gonzalez, C., Ananian, L., Tyrell, R., & Carroll, D. L. (2000). Nurse-coached intervention for the families of patients in critical care unit. Critical Care Nurse, 20(3), 40–48.

Åstedt-Kurki, P., Paavilainen, E., Tammentie, T., & Paunonen-Ilmonen, M. (2001). Interaction be- tween adult patients’ family members and nursing staff on a hospital ward. Scandinavian Journal of Caring Science, 15(2), 142–150.

Azoulay, E., Pochard, F., Chevret, S., Arich, C., Brivet, F., Brun, F. , . . . French Famirea Group. (2003). Family participation on care to the critically ill: Opinions of families and staff. Intensive Care Medicine, 29(9), 1498–1504.

Bacon, F. (1996). In B. Vickers (Ed.), Francis Bacon: The major works. Oxford, England: Oxford University Press.

Bakitas, M., Kryworuchko, J., Matlock, D., & Volandes, A. E. (2011). Palliative medicine and decision science: The critical need for shared agenda to foster informed patient choice in serious illnesss. Journal of Palliative Medicine, 14(10), 1110–1116.

Balik, B., Conway, J., Zipperer, L., & Watson, J. (2011). Achieving an exceptional patient and family experience of inpatient hospital care. IHI innovation series white paper. Cambridge, MA: Institute for Healthcare Improvement. Retrieved from www.IHI.org

Bauer, M., Fitzgerald, L, Haesler, E., & Manfrin, M. (2009). Hospital discharge planning for frail older people and their family. Are we delivering best practice? A review of the evidence. Journal of Clinical Nursing, 18, 2539–2546.

Bell, J. (2011). Relationships: The heart of the matter in family nursing. Journal of Family Nursing, 17(1), 3–10.

Benzein, E. G., & Saveman, B. I. (2008). Health-promoting conversations about hope and suffering with couples in palliative care. International Journal of Palliative Nursing, 14, 439–445.

Bjornsdottir, K. (2002). From the state to the family: Reconfiguring the responsibility for long-term nursing care at home. Nursing Inquiry, 9(1), 3–11.

Black, P., Boore, J. P., & Parahoo, K. (2011). The effect of nurse-facilitated family participation in the psychological care of the critically ill patient. Journal of Advanced Nursing, 67(5), 1091–1101. doi:10.1111/j.1365-2648.2010.05558.x

Boss, P. (2002). Family stress management: A contextual approach (2nd ed.). Thousand Oaks, CA: Sage.

Butler, A., Copnell, B., & Willetts, G. (2014). Family-centred care in the paediatric intensive care unit: an integrative review of the literature. Journal of Clinical Nursing, 23(15/16), 2086–2100. doi:10.1111/jocn.12498

Cannon, S. (2011). Family-centered care in the critical care setting: is it best practice? Dimensions of Critical Care Nursing, 30(5), 241–245. doi:10.1097/DCC.0b013e3182276f9a

Carr, J. M., & Clarke, P. (1997). Development of the concept of family vigilance. Western Journal of Nursing Research, 19(6), 726–739.

Carr, J. M. (2014). A middle range theory of family vigilance. MEDSURG Nursing, 23(4), 251–255. Cassell, E. J. (1991). The nature of suffering the goals of medicine. Oxford: Oxford University Press.

CHAPTER 10 ● Family-Focused Care in Acute Illness 285

2910_Ch10_253-292 06/01/15 12:27 PM Page 285

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Center for Health Design. (2012). The Center for Health Design Pebble Project overview. Retrieved from the Center for Health Design Web site at http://www.healthdesign.org/sites /default/files/ Pebble Project Brochure.pdf

Chesla, C. (2010). Do family interventions improve health? Journal of Family Nursing, 16, 355–377. doi:10.1177/1074840710383145

Chesla, C. A., & Stannard, D. (1997). Breakdown in the nursing care of families in the ICU. American Journal of Critical Care, 6(1), 64–71.

Chien, W. T., Chan, S., Morrissey, J., & Thompson, D. (2005). Effectiveness of a mutual support group for families of patients with schizophrenia. Journal of Advanced Nursing, 51(6), 595–608.

Children’s Hospital of Philadelphia. (2013). Family-centered care at the Children’s Hospital of Philadelphia. Retrieved February 26, 2013 from http://www.chop.edu/service/family-centered- care/family-centered-care1.html

Chintana, W. (2010). Families suffering with HIV/AIDS: What family nursing interventions are useful to promote healing? Journal of Family Nursing, 16(3), 302–321. doi:10.1177/1074840710376774

Clarke, C., & Harrison, D. (2001). The needs of children visiting on adult intensive care units: A re- view of the literature and recommendations for practice. Journal of Advanced Nursing, 34(1), 61–68.

Coulter, M. (1989). The needs of family members of patients in critical care units. Critical Care Nursing, 5, 4–10.

Curtis, J. R., Engelberg, R. A., Wenrich, M. D., Shannon, S. E., Treece, P. D., & Rubenfeld, G. D. (2005). Missed opportunities during family conferences about end-of-life care in the intensive care unit. American Journal of Respiratory Critical Care Medicine, 171(8), 844–849.

Cypress, B. S. (2011). Family conference in the intensive care unit: A systematic review. Dimensions of Critical Care Nursing, 30(5), 246–255. doi:10.1097?DCCob013e318227701

Davidson, J. E. (2009). Family-centered care: Meeting the needs of patients’ families and helping families adapt to critical illness. Critical Care Nurse, 29(3), 28–34.

Davidson, J. E. (2010). Facilitated sensemaking a strategy and new middle-range theory to support families of intensive care unit patients. Critical Care Nurse, 30(6), 28–39. doi:10.4037/ccn2010410

Davidson, J., Jones, C., & Bienvenu, O. (2012). Family response to critical illness: Postintensive care syndrome-family. Critical Care Medicine, 40(2), 618–624.

Davidson, J. E., Powers, K., Hedayat, K. M., Tieszen, M., Kon, A. A., Shepard, E., & Armstrong, D. (2007). Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine task force 2004–2005. Critical Care Medicine, 35(2), 605–622.

Denham, S. A. (2003). Family health: A framework for nursing. Philadelphia: F.A. Davis. Department of Health and Human Services (DHHS). (2011). National Strategy for Quality Improve-

ment in Health Care. Retrieved on May 28, 2012 from http://www.healthcare.gov/law/resources/ reports/quality03212011a.html#na

de Ruiter, H. P. (2007). Quantifying nursing: Caring or catastrophe? Creative Nursing, 13(2), 10. de Ruiter, H. P. (2011). The invisibility of family in the electronic patient record. Paper presented at

the International Family Nursing Conference, June 25, 2011. Doolin, C., Quinn, L. D., Bryant, L. G., Lyons, A. A., & Kleinpell, R. M. (2011). Family presence

during cardiopulmonary resuscitation: Using evidence-based knowledge to guide the advanced practice nurse in developing formal policy and practice guidelines. Journal of the American Acad- emy of Advanced of Nurse Practitioners, 23, 8–14. doi:10.1111/j.1745-7599.2010.00569.x

Dossey, B. M., & Keegan, L. (2013). Holistic nursing (6th ed.). Burlington, MA: Jones & Bartlett. Dudley, S. K., & Carr, J. M. (2004). Vigilance: the experience of parents staying at the bedside of

hospitalized children. Journal of Pediatric Nursing, 19(4), 267–275. Duhamel, F., Dupuis, F., & Wright, L. (2009). Families’ and nurses’ responses to the “one question

questions”: Reflections for clinical practice, education and research in family nursing. Journal of Family Nursing, 15(4), 461–485.

Dupuis, F., Duhamel, F., Gendron, S. (2011). Transitioning care of an adolescent with cystic fibrosis: Development of systemic hypothesis between parents, adolescents, and health care professionals. Journal of Family Nursing, 17(3), 291–311.

286 CHAPTER 10 ● Family-Focused Care in Acute Illness

2910_Ch10_253-292 06/01/15 12:27 PM Page 286

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Duran, C. R., Oman, K. S., Abel, J. J., Koziel, V. M., & Szymanski, D. (2007). Attitudes toward and beliefs about family presence: A survey of healthcare providers, patients’ families, and patients. American Journal of Critical Care, 16(3), 270–282.

Eggenberger, S. K., Krumwiede, N., Meiers, S., Bliesmer, M., & Earle, P. (2004). Family caring strategies in neutropenia. Clinical Journal of Oncology Nursing, 8(6), 617–621.

Eggenberger, S. K., Meiers, S. J., Krumwiede, N. K., Bliesmer, M., & Earle, P. (2011). Family reinte- gration: A family health promoting process in chronic illness. Journal of Nursing and Health Care of Chronic Illness, 3, 283–292.

Eggenberger, S., & Nelms, T. (2007). Being family: The family experience when an adult member is hospitalized with a critical illness. Journal of Clinical Nursing, 16, 1618–1628.

Eggenberger, S. K. , & Regan, M. (2010). Expanding simulation to teach family nursing. Journal of Nursing Education, 49(10), 550–558. doi:http://dx.doi.org/10.3928/01484834- 20100630-01

Emergency Nurses Association. (2009). Emergency nursing resource: Family presence during invasive procedures and resuscitation in the emergency department. Des Plaines, IL: Author. Retrieved from http://www.ena.org/Research/ENR/Documents/FamilyPresence.pdf

Emergency Nurses Association. (2010). Position statement: Family presence during invasive proce- dures and resuscitation in the emergency department. Des Plaines, IL: Author. Retrieved from http://www.ena.org/SiteCollectionDocuments/Position%20Statements/FamilyPresence.pdf

Fontana, J. S. (2006). A sudden, life-threatening medical crisis: The family’s perspective. Advances in Nursing Science, 29(3), 222–231.

Fumagalli, S., Boncinelli, L., Lo Nostro, A., Valoti, P., Baldereshi, G., Di Bari, M., . . . Marchionne, M. (2006). Reduced cardiocirculatory complications with unrestrictive visiting policy in an intensive care unit: Results from a pilot, randomized trial. Circulation, 113, 946–952.

Gardner, G., Woollett, K., Daly, N., & Richardson, B. (2009). Measuring the effect of patient comfort rounds on practice environment and patient satisfaction: A pilot study. International Journal of Nursing Practice, 15(4), 287–293.

Halm, M. (2005). Family presence during resuscitation: A critical review of the literature. American Journal of Critical Care, 14(6), 494–512.

Halm, M. A., Sabo, J., & Rudiger, M. (2006). The patient-family advisory council keeping a pulse on our customers. Critical Care Nurses, 26(5), 58–67.

Hannon, B., O’Reilly, V., Bennett, K., Breen, K., & Lawlor, P. G. (2012). Meeting the family: meas- uring effectiveness of family meetings in a specialist inpatient palliative care unit. Palliative & Supportive Care, 10(1), 43–49.

Hansen, B. S., Rørtveit, K., Leiknes, I., Morken, I., Testad, I., Joa, I., & Severinsson, E. (2012). Patient experiences of uncertainty—A synthesis to guide nursing practice and research. Journal of Nursing Management, 20(2), 266–277. doi:10.1111/j.1365-2834.2011.01369.x

Hardin, S. R. (2012). Engaging families to participate in care of older adult critical care patients. Critical Care Nurse, 32(3), 35–40. doi: http://dx.doi.org/10.4037/ccn2012407

Henriksson, A., Benzein, E., Ternestedt, B., & Andershed, B. (2011). Meeting needs of family members with life-threatening illness: A support group program during ongoing palliative care. Palliative and Supportive Care, 9, 263–271.

Heyland, D., Rocker, G., Dodek, P., Kurtogiannis, D., Konopad, E., Cook, D., . . . Callaghan, C. (2002). Family satisfaction with care in the intensive care unit: Results of a multiple center study. Critical Care Medicine, 30, 1413–1418.

Hinkle, J. L., & Fitzpatrick, E. (2011). Needs of American relatives of intensive care patients: Perceptions of relatives, physicians and nurses. Intensive & Critical Care Nursing, 27(4), 218–225. doi:10.1016/j.iccn.2011.04.003

Hirsch, A. M., Hoeksel, R., Dupler, A. E., & Kaakinen, J. R. (2010). Nurses and families in adult medical-surgical settings. In Kaakinen, J. R., Gedaly-Duff, V., Coehlo, E. P., & Harmon Hanson, S. M. (Eds.), Family health care nursing: Theory, practice, and research (4th ed.). Philadelphia: F. A. Davis.

Horner, S. (1997). Uncertainty in mothers’ care for their ill children. Journal of Advanced Nursing, 26, 658–663.

CHAPTER 10 ● Family-Focused Care in Acute Illness 287

2910_Ch10_253-292 06/01/15 12:27 PM Page 287

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Hughes, F., Bryan, K., & Robbins, I. (2005). Relatives’ experiences of critical care. Nursing in Critical Care, 10(1), 23–30.

Hupcey, J. E. (1998). Establishing the nurse-family relationship in the intensive care unit. Western Journal of Nursing Research, 20(2), 180–194.

Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. Retrieved December 21, 2012 from http://www.iom.edu/Reports/2001/Crossing-the-Quality- Chasm-A-New-Health-System-for-the-21st-Century.aspx

Isovaara, S., Arman, M., & Rehnsfeldt, A. (2006). Family suffering related to war experiences: An interpretative synopsis review of the literature from a caring science perspective. Scandinavian Journal of Caring Sciences, 20(3), 241–250.

Jacobowski, N. L., Girard, T. D., Mulder, J. A., & Wesley, E. (2010). Communication in critical care: Family rounds in the intensive care unit. American Journal of Critical Care, 19(5), 421–430.

Johnson, B., Abraham, M., Conway, J., Simmons, L., Edgman-Levitan, S., Sodomka, P., . . . Ford, D. (2008). Partnering with patients and families to design a patient- and family-centered health care system: Recommendations and promising practices. Bethesda, MD: Institute for Patient- and Fam- ily-Centered Health Care.

Jones, C., Backman, C., & Griffiths, R. (2012). Intensive care diaries and relatives’ symptoms of posttraumatic stress disorder after critical illness: A pilot study. American Journal of Critical Care, 21(3), 172–176. doi:10.4037/ajcc2012569

Kaakinen, J. R., Gedaly-Duff, V., Coehlo, E. P., & Harmon Hanson, S. M. (2010). Family health care nursing (4th ed.). Philadelphia: F. A. Davis.

Kaakinen, J. R., Coehlo, D. P., Steele, R., Tabacco, A. & Hanson, S. H. (2015). Family health care nursing: Theory, practice, and research. Philadelphia: F. A. Davis.

Kean, S. (2010). Children and young people visiting an adult intensive care unit. Journal of Advanced Nursing, 66(4), 868–877.

Kelley, T. F., Brandon, D. H., & Docherty, S. L. (2011). Electronic nursing documentation as a strategy to improve quality of patient care. Journal of Nursing Scholarship, 43(2), 154–162.

King, B., Gilmore-Bykovskyi, A., Roiland, R., Polnaszek, B., Bowers, B., & Kind, A. (2013). The consequences of poor communication during transitions from hospital to skilled nursing facility: A qualitative study. Journal of the American Geriatrics Society, 61(7), 1095–1102.

Knafl, K. A., Deatrick, J. A., Knafl, G. J., Gallo, A. M., Grey, M., & Dixon, J. (2013). Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. Journal of Pediatric Nursing, 28(6), 523–535. doi:10.1016/j.pedn.2013.03.006

Knutsson, S., Samuelsson, I. P., Hellstrom, A. L., & Berghbom, J. (2008). Children’s experiences of visiting a seriously ill/injured relative on an adult intensive care unit. Journal of Advanced Nursing 61(2), 154–162. doi:10.1111/j.1365-2648.2007.04472.x

Kreitzer, M. J., & Zborowsky, T. (2009). Creating optimal healing environments. In M. Snyder & R. Lindquist (Eds.), Complementary and alternative therapies in nursing. New York: Springer.

Leahey, M., & Svavarsdottir, E. K. (2009). Implementing family nursing: How do we translate knowledge into clinical practice? Journal of Family Nursing, 15(4), 445–460. doi:10.1177/1074840709349070

Leape, L., Berwick, D., Clancy, C., Conway, J., Gluck, P., Guest, J., . . . Isaac, T. (2009). Transforming healthcare: A safety imperative. Quality and Safety in Health Care, 18, 424–428.

Leske, J. S. (1991). Overview of family needs after critical illness: From assessment to intervention. AACN Clinical Issues, 2(2), 220–228.

Li, H., Melnyk, B. M., & McCann, R. (2004). Review of intervention studies of families with hos- pitalized elderly relatives. Journal of Nursing Scholarship, 36(1), 54–59.

Litchfield, M. C. (2011). Family nursing: A systematic approach to innovative health care delivery. In E. K. Svaversdottir & H. Jonsdottir (Eds.), Family nursing in action (pp. 285–307). Reykjavik, Iceland: University of Iceland Press.

Luce, J. M., & White, D. B. (2007). The pressure to withhold or withdraw life-sustaining therapy from critically ill patients in the United States. American Journal of Respiratory and Critical Care Medicine, 175, 1104–1108.

Lynn-McHale, D. J., & Deatrick, J. A. (2000). Trust between family and health care provider. Journal of Family Nursing, 6, 210–230.

288 CHAPTER 10 ● Family-Focused Care in Acute Illness

2910_Ch10_253-292 06/01/15 12:27 PM Page 288

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

MacLean, S., Guzzetta, C. E., White, C., Fontaine, D., Eichhorn, E., Meyers, T. A., & Desy, P. (2003). Family presence during cardiopulmonary resuscitation and invasive procedures: Practices of critical care and emergency nurses. American Journal of Critical Care, 12(3), 246–257.

Marek, K. D., Adams, S. J., Stetzer, F., Popejoy, L., & Rantz, M. (2010). The relationship of com- munity-based nurse care coordination to costs in the Medicare and Medicaid programs. Research in Nursing and Health, 33, 235–242.

Marshall, A., Bell, J., & Moules, N. (2010). Beliefs, suffering, and healing: A clinical practice model for families experiencing mental illness. Perspectives in Psychiatric Care, 46(3), 197–208. doi:10.1111/j.1744-6163.2010.00259.x

Martinez, A. M., D’Artois, D., & Rennick, J. (2007). Does “the 15-minute (or less) family interview” influence nursing practice? Journal of Family Nursing, 13, 157–178.

Mast, M. (1998). Survivors of breast cancer: Illness uncertainty, positive reappraisal, and emotional distress. Oncology Nursing Forum, 25(3), 555–562.

McAdam, J. L., Dracup, K. A., White, D. B., Fontaine, D. K., & Puntillo, K. A. (2010). Symptom experiences of family members of intensive care unit patients at high risk for dying. Critical Care Medicine, 38(4), 1078-1085. doi:http://dx.doi.org/10.1097/CCM.0b013e3181cf6d94

McBride Robichaux, C., & Clark, A. P. (2006). Practice of expert critical care nurses in situations of prognostic conflict at the end of life. American Journal of Critical Care, 5, 480–491.

McCabe, C. (2003). Nurse-patient communication: An exploration of patients’ experiences. Journal of Clinical Nursing, 13(1), 41–49.

McMillan, S. C., & Small, B. J. (2007). Using the COPE intervention for family caregivers to improve symptoms of hospice homecare patients: A clinical trial. Oncology Nursing Forum, 34(2), 313–321.

Meiers, S. J. (2003). Family-nurse co-construction of meaning: A central phenomenon of family caring. Scandinavian Journal of Caring Science, 17, 193–201.

Meiers, S. J., & Brauer, D. J. (2008). Existential caring in the family health experience: A proposed conceptualization. Scandinavian Journal of Caring Science, 22, 110–117.

Meterko, M., Mohr, D. C., & Young, G. J. (2004). Teamwork culture and patient satisfaction in hospitals. Medical Care, 42(5), 492–498.

Meyers, T. A., Eichhorn, D. J., Guzzetta, C. E., Clark, A. P., & Taliaferro, E. (2000). Family presence during invasive procedures and resuscitation: The experience of family members, nurses, and physicians. American Journal of Nursing, 100(2), 32–42.

Mishel, M. H. (1997). Uncertainty in acute illness. Annual Review of Nursing Research, 15, 57–80.

Mishel, M. H., & Clayton, M. (2008). Theories of uncertainty in illness. In J. M. Smith & P. R. Liehr (Eds.), Middle range theory for nursing (2nd ed.). New York: Springer.

Mitchell, M., Chaboyer, W., Burmeister, E., & Foster, M. (2009). Positive effects of a nursing intervention on family-centered care in adult critical care. American Journal of Critical Care, 18(6), 543–553.

Molter, N. C. (1979). The needs of relatives of critically ill patients: A descriptive study. Heart and Lung, 8, 332–339.

Munn-Giddings, C., & McVicar, A. (2006). Self-help groups as mutual support: What do carers value? Health and Social Care in the Community, 15(1), 26–34.

National Hospice and Palliative Care Organization. (2008). Position statement on access to palliative care in critical care settings: A call to action. Alexandria, VA: Author. Retrieved from http:// www.nhpco.org/files/public/NHPCO_PC-in-ICU_statement_Sept08.pdf

Nelms, T. P., & Eggenberger, S. K. (2010). Essence of the family critical illness experience and family meetings. Journal of Family Nursing, 16(4), 462–486.

Northouse, L. L, Walker, J., Schafenacker, A., Mood, D., Mellon, S., Galvin, E., . . . Fretman-Gibb, L. (2002). A family-based program of care for women with recurrent breast cancer and their family members. Oncology Nursing Forum, 29(10), 1411–1419. doi:10.1188/02.ONF.1411-1419

Office of Civil Rights: Health and Human Services Department. (2012). A health care provider’s guide to the HIPAA privacy role: Communicating with a patient’s family, friends or others involved in the patient’s care. Retrieved on May 22, 2012 from http://www.hhs.gov/ocr/privacy/hipaa/ understanding/coveredentities/provider_ffg.pdf

CHAPTER 10 ● Family-Focused Care in Acute Illness 289

2910_Ch10_253-292 06/01/15 12:27 PM Page 289

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Pastor-Montero, S. M., Romero-Sanchez, J. M., Paramio-Castro, O., Lilo-Crespo, M., Castro-Yuste, C., Toledano-Losa, A. C., . . . Frandsen, A. J. (2012). Tackling parental loss, a participatory action re- search approach: Research protocol. Journal of Advanced Nursing, 61(11), 2578–2585.

Paterson, B., Kieloch, B., & Gmiterek, J. (2001). They never told us anything: Postdischarge instruc- tion for families of persons with brain injuries. Rehabilitation Nursing, 26(20), 48–53.

Persily, C. A., & Hildebrandt, E. (2008). Theory of community empowerment. In M. J. Smith & P. R. Liehr (Eds.), Middle range theory of nursing (2nd ed., pp. 131–144). New York: Springer.

Picker Institute. (2012). Improving healthcare through the patient’s eyes. Retrieved May 28, 2012 from http://pickerinstitute.org/

Planetree. (2012). The Planetree Model. Retrieved May 28, 2012 from http://planetree.org/ Popejoy, L. L. (2011). Complexity of family caregiving and discharge planning. Journal of Family

Nursing, 17(1):61–81. doi:10.1177/1074840710394855 Rappaport, D. I., Ketterer, T. A., Nilforoshan, V., & Sharif, I. (2012). Family-centered rounds: Views

of families, nurses, trainees, and attending physicians. Clinical Pediatrics, 51(3), 260–266. Roberti, S. M., & Fitzpatrick, J. J. (2010). Assessing family satisfaction with care of critically ill

patients: A pilot study. Critical Care Nurse, 30(6), 18–26. doi:10.4037/ccn/2010448 Robichaux, C. M., & Clark, A. P. (2006). Practice of expert critical care nurses in situations of prog-

nostic conflict at the end of life. American Journal of Critical Care, 15(5), 480–491. Robinson, C. A., & Wright, L. M. (1995). Family nursing interventions: What families say makes a

difference. Journal of Family Nursing, 1, 327–345. Sabo, K. A., Kraay, C., Rudy, E., Abraham, T., Bender, M., Lewandowski, W., & Dawson, D. (1989).

ICU family support group sessions: Family members’ perceived benefits. Applied Nursing Research, 2(2), 82–89.

Sacco, T. L., Stapleton, M. F., & Ingersoll, G. L. (2009). Support groups facilitated by families of former patients: Creating family inclusive critical care units. Critical Care Nurse, 29(3), 36–45.

Sammarco, A. (2001).Perceived social support, uncertainty, and quality of life of younger breast can- cer survivors. Cancer Nursing, 24(3), 212–219.

Sammarco, A., & Konecny, L. M. (2010). Quality of life, social support, and uncertainty among Latina and Caucasian breast cancer survivors: A comparative study. Oncology Nursing Forum, 37(1), 93–99.

Santiago, C., Lazar, L., Depeng, J., & Burns, K. A. (2014). A survey of the attitudes and perceptions of multidisciplinary team members towards family presence at bedside rounds in the intensive care unit. Intensive and Critical Care Nursing, 30(1), 13–21. doi:10.1016/j.iccn.2013.06.003

Sharkey, T. (1995). The effects of uncertainty in families with children who are chronically ill. Home Healthcare Nurse, 13(4), 37–42.

Soderstrom, I., Benzein, E., & Saveman, B. (2003). Nurses’ experiences of interactions with family members in the intensive care unit. Scandinavian Journal of Caring Sciences, 17, 185–192.

Stacy, K. M. (2012). Withdrawal of life-sustaining treatment: A case study. Critical Care Nurse, 32(3), 14–24. doi:http://dx.doi.org/10.4037/ccn2012152

Stayt, L. C. (2009). Death, empathy and self-preservation: The emotional labour of caring for families of the critically in adult intensive care. Journal of Clinical Nursing, 18, 1267–1275.

Stone, A. M., & Jones, C. L. (2009). Sources of uncertainty: Experiences of Alzheimer’s disease. Issues in Mental Health Nursing, 30, 677–686.

Strang, S., Henoch, I., Danielson, E., Browall, M., & Melin-Johansson, C. (2014). Communication about existential issues with patients close to death-nurses’ reflections on content, process and meaning. Psycho-Oncology, 23(5), 562–568. doi:10.1002/pon.3456

Svavarsdottir, E. K., & Jonsdottir, H. (2011). Family nursing in action. Reykjavik, Iceland: University of Iceland Press.

Svavarsdottir, E. K., Tryggvadottir, G. B., & Sigurdardottir, A. O. (2012). Knowledge translation in family nursing: Does a short-term therapeutic conversation intervention benefit families of children and adolescents in a hospital setting? Findings from the Landspitali University Hospital Family Nursing Implementation Project. Journal of Family Nursing, 18(3), 303–327.

Tapp, D. M. (2001). Conserving the vitality of suffering: Addressing family constraints to illness conversations. Nursing Inquiry, 8(4), 254–263.

290 CHAPTER 10 ● Family-Focused Care in Acute Illness

2910_Ch10_253-292 06/01/15 12:27 PM Page 290

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Tinsley, C. J., Hill, B., Shah, J., Zimmerman, G., Wilson, M., Freier, F., & Abd-Allah, S. (2008). In- tensive care unit experience of families during cardiopulmonary resuscitation in pediatrics. Pediatrics, 122, 799. doi: 10.1542/peds.2007-3650

Tomlinson, P. S., Peden-McAlpine, C., & Sherman, S. (2012). A family systems nursing intervention model for paediatric health crisis. Journal of Advanced Nursing, 68(3), 705–714.

Tong, V., & Kaakinen, J. R. (2015). Family nursing in acute care adult settings. In J. R. Kaakinen, D. P. Coehlo, R. Steele, A. Tabacco, & S. M. Harmon Hanson (Eds.), Family health care nursing: Theory, practice, and research (5th ed.). Philadelphia: F. A. Davis.

Trimm, D. R., & Sanford, J. T. (2010). The process of family waiting during surgery. Journal of Family Nursing, 16 (4), 435–461. doi:10.1177/1074840710385691

Trochelman, K., Albert, N., Spence, J., Murray, T., & Slifcak, E. (2012). Patients and their families weigh in on evidence-based hospital design. Critical Care Nurse, 32(1), 1–11. doi:10.4037/ccn2012785

Ulrich, R. S., Zimring, C., Zhu, X., DuBose, J., Seo, H. B., Choi, Y. S., . . . Joseph, A. (2008). A review of the research literature on evidence-based healthcare design. Health Environments Research & Design Journal, 1(3), 61–125.

Université de Montreal (2000). Family genograph. Montreal, Quebec, Canada. Vandall-Walker, V., & Clark, A. (2011). It starts with access! A grounded theory of family

members working to get through critical illness. Journal of Family Nursing, 17(2), 148–181. doi:10.1177/1074840711406728

Van Horn, E. R., & Kautz, D. (2007). Promotion of family integrity in the acute care setting: A review of the literature. Dimensions of Critical Care Nurse, 26(3), 101–107.

Van Horn, E., & Tesh, A. (2000). The effect of critical care hospitalization on family members: stress and responses. Dimensions of Critical Care Nursing, 19(4), 40–49.

Verhaeghe, S., Defloor, T., Van Zuuren, F., Duijnstee, M., & Grypdonick, M. (2005). The needs and experiences of family members of adult patients in an intensive care unit: A review of the literature. Journal of Clinical Nursing, 14(4), 501–509.

Verhaeghe, S., van Zuuren, F., Grypdonck, M., Duijnstee, M., & Defloor, T. (2010). The focus of family members’ functioning in the acute phase of traumatic coma. Part Two: protecting from suf- fering and protecting what remains to rebuild life. Journal of Clinical Nursing, 19(3–4), 583–589. doi:10.1111/j.1365-2702.2009.02964.

Warnock, C., Tod, A., Foster, J., & Soreny, C. (2010). Breaking bad news in inpatient clinical settings: Role of the nurse. Journal of Advanced Nursing, 66(7), 1543–1555. doi:10.111/j.1365-2648. 2010.05325.x

Warren, N. (2012). Involving patient and family advisors in the patient and family-centered care model. MEDSURG Nursing, 21(4), 233–239.

Weihs, K. L., Fisher, L., & Baird, M. (2002). Families, health and behavior. A section of the Commis- sioned Report by the Committee on Health and Behavior: Research, Practice, and Policy, Division of Neuroscience and Behavioral Health and Division of Health Promotion and Disease Prevention, Institute of Medicine, National Academy of Sciences. Families, Systems and Health, 20(1), 7–46.

Weingarten, K. (2012). Sorrow: A therapist’s reflection on the inevitable and the unknowable. Family Process, 51(4), 440–455.

Weiss, M. E., Piacentine, L. B., Ancona, J., Gresser, S., Toman, S., & Vega-Stromberg, T. (2007). Per- ceived readiness for hospital discharge in adult medical-surgical patients. Clinical Nurse Specialist, 21, 31–42.

Wiegand, D. (2008). In their own time: the family experience during the process of withdrawal of life-sustaining therapy. Journal of Palliative Medicine, 11(8), 1115–1121.

Wiegand, D. L. (2006). Withdrawal of life-sustaining therapy after sudden, unexpected life-threat- ening illness or injury: Interactions between patients’ families, healthcare providers, and the health care system. American Journal of Critical Care, 15(2), 178–187.

Wiegand D. L., Deatrick J. A., & Knafl K. A. (2008). Family management styles related to withdrawal of life-sustaining therapy from adults who are acutely ill or injured. Journal of Family Nursing, 14(1), 16–32. doi:10.1177/107484070731333810.1177/1074840707313338

Wiggins, M. S. (2008). The partnership care delivery model: An examination of the core concept and the need for a new model of care. Journal of Nursing Management, 16, 629–638.

CHAPTER 10 ● Family-Focused Care in Acute Illness 291

2910_Ch10_253-292 06/01/15 12:27 PM Page 291

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Williams, C. (2005). The identification of family members’ contribution to patients’ care in the intensive care unit: A naturalistic inquiry. Nursing in Critical Care, 10(1), 6–14.

Wineman, N. M., O’Brien, R. A., Nealon, N. R., & Kaskel, B. (1993). Congruence in uncertainty between individuals with multiple sclerosis and their spouses. Journal of Neuroscience Nursing, 25, 356–361.

Wingate, S., & Wiegand, D. L. (2008). End-of-life care in the critical care unit for patients with heart failure. Critical Care Nurse, 28(2), 84–94.

Wolf, Z. R., Miller, P. A., & Devine, M. (2003). Relationship between nurse caring and patient satisfaction in patients undergoing invasive cardiac procedures. MEDSURG Nursing, 12(6), 391–396. Retrieved May 12, 2012 from http://findarticles.com/p/articles/mi_m0FSS/is_6_12/ ai_n18616793/?tag=content;col1

Wright, L. M. (2005). Spirituality, suffering, and illness: Ideas for healing. Philadelphia: F. A. Davis. Wright, L. (2008). Softening suffering through spiritual care practices: One possibility for healing

families. Journal of Family Nursing, 14(4), 394–411. Wright, L. M., & Bell, J. M. (2009). Beliefs and illness: A model of healing. Calgary, Alberta, Canada:

4th Floor Press. Wright, L. M., & Leahey, M. (2009). Nurses and families: A guide to family assessment and intervention

(4th ed.). Philadelphia: F. A. Davis. Wright, L., & Leahey, M. (2013). Nurses and families: A guide to family assessment and intervention

(6th ed.). Philadelphia: F. A. Davis. Wright, L. M., Watson, W. L., & Bell, J. M. (1996). Beliefs: the heart of healing in families and

illness. New York; Basic Books. Xu, Y., Testerman, L., Owen, J., Bantum, E., Thornton, A., & Stanton, A. (2014). Modeling intention

to participate in face-to-face and online lung cancer support groups. Psycho-Oncology, 23(5), 555–561. doi:10.1002/pon.3449

292 CHAPTER 10 ● Family-Focused Care in Acute Illness

2910_Ch10_253-292 06/01/15 12:27 PM Page 292

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-26 02:27:12.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

“Doing For” and “Being With” Patricia K. Young ● Susan Lampe

C H A P T E R 13

C H A P T E R O B J E C T I V E S

1. Differentiate between the constructs of “ doing for” and “ being with.” 2. Explain nursing actions linked with “ doing for” and “ being with.” 3. Explain the aspects of relationship-based family nursing practice. 4. Analyze perceived barriers to cultivating caring relationships. 5. Define the scope of caring in family nursing practice. 6. Examine personal strengths and limitations that enhance or threaten caring relationships.

C H A P T E R C O N C E P T S

● “ Being with” ● Burnout ● Caring ● Caring barriers ● “ Doing for”

● Intentional care ● Mindfulness ● Personal barriers ● Refection ● Self-care skills

Introduction

This chapter discusses a conflict often found in nursing that pertains to ideas about “doing for” and “being with” those receiving care in clinical care situations. Task-oriented nurses are busily doing nursing activities, trying to fulfill expected roles and meet employer’s ex- pectations. Most work favors the “doing for” task-oriented actions, but this aspect of care is different from “being with” a person. “Being with” is about sensitively providing care. Some nurses might say that “being with” not only uses nursing skills and competencies, but it helps them form individual-nurse-family relationships. Technology can help extend the scope of care, but it is not the same as the presence of a nurse. Those seeking care want someone who cares, listens, and is available.

Since the 1980s, much has been published about the importance of nurses’ caring roles. Many have discussed values and meanings associated with giving nursing care. In a busy world, clinical practice is often reduced to tasks. Work is measured by outcomes, compliance with regulations, and meeting accreditation standards. Sometimes nurses are uncertain about the limits of professional boundaries. You might ask, “How can nurses give care without

351

2910_Ch13_351-374 06/01/15 2:02 PM Page 351

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

being too friendly or overly involved? What about invading a family’s privacy?” At the end of a workday, nurses might be unsure about how they will find time to truly give care.

Many people become nurses because they want to help others. However, the demands of daily work leave little time to do extra things. Getting family members involved just seems like an additional burden. How do you fit family members into an already too busy day? Nurses are often asked to “do more with less.” Complete more tasks. Prioritize care. Achieve the desired outcomes. Most activities seem to focus on “doing for.” All of the tasks and activities distract nurses from “being with” those who need their care. Nurses who think family know the difference between “doing” and “being.” They are adept at enacting both. Listening, thinking, and reflecting are tools for “being.” This chapter identifies what nurses can do to strengthen the caring aspects of practice. Ideas about “being with” and the development of meaningful relationships are explained.

Understanding the Concepts

The ideas of “doing for” and “being with” seem to reflect different ways to provide care. In nursing practice, more attention seems to be given to “doing for.” But “being with” is just as important. These two caring expressions are central to nursing values in providing family-focused care (Fig. 13.1).

“ Doing For”

“Doing for” involves tasks and action. This work includes the person needing care and their family members. “Doing for” implies action, busyness. Some might say the opposite of “doing for” is doing nothing. That is not what is implied here.

“ D oing For” th e Person

Virginia Henderson (1991), a nursing theorist, focused many of her ideas on “doing for.” She said nurses’ roles were to assist the sick to accomplish tasks they are unable to do

352 CHAPTER 13 ● “ Doing For” and “ Being With”

FIGURE 13 -1 “ Doing for” and “ being with” are two important concepts in ways of providing care.

2910_Ch13_351-374 06/01/15 2:02 PM Page 352

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

independently. This view is about performing activities for individuals and was often em- phasized in the 1960s. “Doing for” describes the actions nurses take to provide care to a person to promote or maintain health, recover, manage an illness or disease, or even have a peaceful death. “Doing for” is done with psychomotor skills. These actions in- clude taking vital signs, giving medications, helping with personal hygiene, monitoring intravenous fluids, and changing dressings. Consider the following examples:

• A nurse cares for the physical needs (e.g., bath, nutrition, elimination, vital signs) of an unconscious person. “Doing for” is direct care given when a physical limitation exists, such as wearing a cast or dealing with hemiparesis from a stroke.

• While changing a dressing the nurse is completing a procedure and teaching a family member how to do needed tasks. “Doing for” can benefit the person and the family.

“ D oing For” th e Person’s Family

Think about a family that does not understand what is happening with a member. The nurse will “do for” the person and family by giving needed care. At the same time, the nurse evaluates what questions the family might have. Family nurses know that recognizing and acknowledging family has great potential for healing (Wright & Leahey, 1999). Family nurses know it is important that families be able to manage care at home. They want to be sure that family units have the knowledge and skills needed. In ambulatory care settings, “doing for” might be health teaching or giving counseling. Families need to know what to do when persons have complex or extensive care needs. They might even be concerned about things nurses think of as usual care (e.g., bathing, grooming, toileting, diet, activity, medications). “Doing for” is more than just taking care of the obvious care needs. Think about a family that has a child with a developmental disability. “Doing for” could mean the nurse acts as an advocate and speaks to a physician on their behalf. Nurses who think family notice unique family situations and anticipate future needs. These nurses provide needed information and help locate resources. “Doing for” can also imply the nurse reflects about family care needs and helps family members get information they need.

“ B eing With”

“Being with” can mean sitting quietly with individuals or families without visible actions— doing nothing. However, this is only partially true. “Being with” involves sharing an emo- tional presence. This includes listening, seeking to understand a point of view, and learning what matters most. “Being with” might mean assisting family members to understand an elder’s point of view in an end-of-life decision.

B eing E motionally Present and L istening

“Being with” is somewhat like the idea of presence. To be present means that the nurse is available and willing to connect with another human being (Benner & Wrubel, 1989). It is a way of recognizing a shared humanity and is different from being aloof, when one is physically present but one’s thoughts are elsewhere. Nurses can use eye contact, body lan- guage, and tone of voice to enhance a sense of presence or “being with.” For example, a new mother may need emotional support and health teaching for breastfeeding. A spouse of an individual with newly diagnosed diabetes may need to learn to give insulin. “Being with” means the nurse listens to concerns. Questions are answered. Empathy is given. Nurses who think family know that coaching usually requires a caring presence.

“Being with” is not passive or a one-way activity. “Being with” is a skill that can be learned. Some nurses maintain that “being with” individuals or a family is the essential

CHAPTER 13 ● “ Doing For” and “ Being With” 353

2910_Ch13_351-374 06/01/15 2:02 PM Page 353

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

core of nursing practice (Hartrick Doane, 2002; Idczak, 2007). When nurses focus on “being with” they are in tune and alert for opportunities to notice and respond to individual and family cues. “Being with” implies an open mind and willingness to understanding other perspectives, providing a calm, reassuring presence during a crisis. This presence means listening to needs in a situation because needs for individuals and families differ. Dame Cicely Saunders, an English nurse, physician, medical social worker, and writer, is best known for her role in beginning the hospice movement. She taught that “being with” was a key element in the care of the dying. Presence is important for building trust through an individual-nurse-family relationship. Nurses learn how to treat pain, care for those who are dying, and empathize with those who are suffering by being present.

U nderstanding O th ers

Family members know how a member responds to pain. They can share information about what impedes treatment, care management, or rehabilitation; one another’s food prefer- ences and physical activity; each other’s medical history; and how other members view ill- ness experiences. Family members can discuss reasons why self-care practices are not being done. To “be with” a woman newly diagnosed with breast cancer, the nurse may ask her to share feelings about the diagnosis. As the nurse listens, she may describe her fears and concerns, providing an opportunity for the nurse to explain or answer troubling questions. The nurse might note some of her inner strengths and offer positive feedback. Dr. Erla Svavarsdottir has worked extensively at Landspitali University Hospital in Reykjavik, Iceland to involve families of those experiencing chronic conditions (Box 13.1).

L earning W h at Matters to th e Person and th e Family

Therapeutic relationships are built by “being with” individuals. Showing respect and build- ing trust come through “being with” those needing care services. Learning “little things,” like the preference for tea rather than coffee, can demonstrate care and empathy. Nursing presence implies care that can be experienced by others. A classic study about expertise in

354 CHAPTER 13 ● “ Doing For” and “ Being With”

BOX 13-1

Family Tree

Erla Svavarsdottir, PhD (Iceland)

Erla Kolbrun Svavarsdottir, PhD, RN, is a professor and academic chair of Family Nursing, Faculty of Nursing, School of Health Sciences, at the University of Iceland. She established the clinical specialization of Family Systems Nursing at the master’s and doctoral levels. She also serves as the head of the Section of Research and Development in Family Nursing at Landspitali University Hospital in Reykjavik, Iceland. Dr. Svavarsdottir completed her doctoral program in 1997 at the University of Wisconsin–Madison under the supervision of Dr. Marilyn McCubbin. She has provided sustained leadership in cutting- edge knowledge translation efforts in family nursing as co-principal investigator of the Landspitali University Hospital Family Nursing Implementation Project (2007–2011). This landmark 4-year project implemented Family Systems Nursing on every unit of a large university hospital in Reykjavik. Dr. Svavarsdottir has worked extensively with Icelandic researchers on family intervention research projects with families of children and adolescents experiencing cancer, asthma, diabetes, anorexia, and bulimia. She received an Innovative Contribution to Family Nursing Award in 2005 from the J ournal of Family Nursing for her outstanding leadership in family nursing in Iceland. In 2009 she chaired the Ninth International Family Nursing Conference held in Reykjavik, Iceland. She is co-editor of a family nursing textbook called Family Nursing in Action (2011) and co-authored a chapter in this book. Dr. Svavarsdottir has served on the Board of Directors for the International Family Nursing Association.

2910_Ch13_351-374 06/01/15 2:02 PM Page 354

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

nursing practice said that families have vital secrets that are important for optimal indi- vidual care (Benner, Hooper-Kyriakidis, & Stannard, 1999). When student nurses estab- lished connections with children in their care, they were better prepared to connect with others in the future (Coetzee, 2004). Family nurses are likely to have similar experiences with adults. Opening oneself to human relationships is at the core of nursing practice (Hartrick Doane, 2002). Nurses who only concentrate on “doing for” can overlook the uniqueness of the individuals, families, and situations found through “being with” others.

The Practice of “ Doing For” and “ Being With”

Consider this excerpt from the novel Cutting for Stone (Verghese, 2009). A surgeon, Dr. Stone, is reading a letter he received from a patient’s mother—a patient who had died recently in the emergency department. The mother wrote:

Dr. Stone—My son’s terrible death is not something I will ever get over, but perhaps in time it will be less painful. But I cannot get over one image, a last image that could have been different. Before I was asked to leave the room in a very rough manner, I must tell you that I saw my son was terrified and there was no one who addressed his fear. The only person who tried was a nurse. She held my son’s hand and said, “Don’t worry, it will be all right.” Everyone else ig- nored him. Sure, the doctors were busy with his body. It would have been merciful if he had been unconscious. They had important things to do. They cared only about his chest and belly. Not about the little boy who was in fear. Yes, he was a man, but at such a vulnerable moment, he was reduced to a little boy. I saw no sign of the slightest bit of human kindness. My son and I were irritants. Your team would have preferred for me to be gone and for him to be quiet. Eventually they got their wish. Dr. Stone, as head of surgery, perhaps as a parent yourself, do you not feel some obligation to have your staff comfort the patient? Would the patient not be better off with less anxiety, less fright? My son’s last conscious memory will be of people ignoring him. My last memory of him will be of my little boy, watching in terror as his mother is escorted out of the room. It is the graven image I will carry to my own deathbed. The fact that people were attentive to his body does not compensate for their ignoring his being.

This narrative illuminates the significance of not only “doing for” the body, but of also attending to the person through “being with” them. “Doing for” the body is necessary and important, especially in critical care situations. However, “being with” the person or family is equally necessary.

Rather than considering “doing for” and “being with” as two different things, nurses can consider them to be interrelated aspects of effective nursing care. More than a few things are always happening in every care interaction. A student nurse reflects about a care experience with a person having difficulty speaking after a stroke:

The [student] understood that the patient was upset during her morning care. Through patience and a willingness to spend time with the patient, the [student] was able to make a connection with her. She learned that the sponge used to clean the patient’s teeth was not “minty” enough and she wrote [in her reflective journal]:

Although the conversation took a while because of my difficulty understanding her, I finally understood how it meant a lot to her if I would clean her mouth thoroughly. After I finished with her teeth she expressed how she felt much better and how she could taste the mint. Through her facial expression I was able to see how much she appreciated my time in trying to understand her and thoroughly cleaning her teeth and mouth. I felt I was making a differ- ence in this patient’s life even though it was very minor compared to the difficulties she was going through with her stroke.” (Idzcak, 2007, p 70)

The student realized what this woman needed—taking the time to be with her helped the student nurse better understand exactly what was needed, both “doing” and “being” actions.

CHAPTER 13 ● “ Doing For” and “ Being With” 355

2910_Ch13_351-374 06/01/15 2:02 PM Page 355

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Connecting With Persons and Their Families

Family nurses use both “doing for” and “being with” during family interactions. Nurses can “be with” individuals and families at the first meeting. Use eye contact as introductions are made. As questions about the person’s current condition are asked, nurses listen carefully to responses and address unique needs. A meeting might occur because “doing for” is needed, but the nurse’s presence or “being with” can change levels of satisfaction with what occurred.

O bserving Nonverbal Cues

Nurses make better connections when they have a “being with” presence. Assessments and careful observations help nurses collect needed information. The nurse notes things that provide clues to needs beyond the biophysical. Is the person grimacing or do they have a flat affect? Are they calm or chaotic? Are significant family members present? Do family members ask questions that show concern? Although hearing oral responses is important, observing nonverbal cues is equally important. Nurses who have spent time “being with” those seeking care are more apt to be aware of nonverbal cues (Fig. 13.2). The nurse can adjust care based on cues and provide more personal care. The nurse might make a pro- posal (e.g., try sitting up instead of lying down). Or, the nurse might question: Besides medicines, what else has been helpful in relieving pain?

Assessing Personal and Family Needs

Family nurses accompany individuals and families through illness experiences to assure that things they value are addressed. Here are some questions the nurse might ask:

• What does this illness experience mean to you and your family? • Is the person seeking care the family’s primary breadwinner or does he or she play

certain vital roles in the family? • Will a significant monetary loss occur because of the situation at hand?

356 CHAPTER 13 ● “ Doing For” and “ Being With”

FIGURE 13 -2 Nurses need to be aware of nonverbal cues.

2910_Ch13_351-374 06/01/15 2:02 PM Page 356

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

• How long will this situation exist? • Do the person and family understand the diagnosis and treatment? • Is this a recurrence of a progressive disease that causes future concerns? • What is your family’s previous experience with illness, suffering, and healing? • Does the treatment require lengthy time away from family, work, school, or other

tasks?

When nurses ask questions about family needs, they better discern specific concerns. Nurses who think family know that addressing the specific needs of a family unit is the hallmark of family-focused nursing practice.

Providing Intentional Care

Nurses who think family are intentional in the care provided. They consider these things:

• What is the goal of this interaction? • What is the most important thing that needs to be given attention? • Is the priority to tell, show, or do? (“doing for”) • Is the priority to listen, notice, or respond? (“being with”)

The nurse uses “doing for” and “being with” as intentional actions. Family-focused care requires both. Thinking about “doing for” and “being with” is important because what the nurse does and how it is done make a difference (Karlsson & Bergbom, 2010). People need human connections that affirm their humanity. Those interactions can occur while the nurse is giving other care. For instance, if the family shows interest in what is being done, the nurse can use this as a teachable moment. Thinking family shows genuine care as questions are asked. Commendations are given when family effectively demonstrates techniques. Nurses use their presence to guide, coach, and support.

Ways of Caring

Caring is an expected standard of nursing practice (American Association of Colleges of Nursing, 2008). Caring behaviors need to be used with family units, peers, and other health care team members.

“Doing for” and “being with” are two expressions of caring. “Doing for” is often seen as an instrumental behavior of caring. “Being with” is an expressive caring behavior. Florence Nightingale taught us first about caring. In her book Notes on Nursing (1859), she wrote of her frustration with nursing:

. . . nursing has been limited to signify little more than the administration of medicine and the application of poultices. It [nursing] ought to signify the proper use of fresh air, light, warmth, cleanliness, quiet and the proper selection and administration of diet—all at the least expense of vital power to the patient. . . the very elements of nursing are all but unknown. (Nightingale, 1992, p 6)

Nightingale thought nursing was more than “doing for” patients; it requires care for the whole.

During the 1960s and 1970s, nursing moved away from emphasizing caring in favor of being more “scientific.” Emphasis was placed on the physical sciences and psychomotor skills. In 1985, Jean Watson published her caring theory and encouraged nurses to recog- nize that caring is an essential aspect of nursing care. Consumers of nursing services want and need caring practices. Caring is a way to be in relationship with self, others, and the

CHAPTER 13 ● “ Doing For” and “ Being With” 357

2910_Ch13_351-374 06/01/15 2:02 PM Page 357

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

broader environment. The care experience cannot be separated from family, culture, community, and society (Watson & Foster, 2003).

Practicing nurses are expert role models who can provide first-person accounts to help our understanding of being healthy and being ill (Benner & Wrubel, 1989). These ideas made critical differences for persons and families. Note three ways nurses with expert fam- ily care skills care for persons in critical care units:

• Ensure that the family can be with the patient. • Provide the family with information and support. • Encourage family involvement in caregiving activities.

During the 1990s, the nursing literature said much about nursing’s caring role. Nursing is informed caring for the well-being of others and this caring preserves human dignity and well-being (Swanson, 1993). For example, an infant and a new mother have many needed care areas (e.g., physiology, developmental, neurobehavioral, mother’s beliefs, values, and understanding) (Swanson,1993). Nurses use caring techniques and knowledge in subtle ways. For example, a newborn intensive care unit nurse places a pacifier in a preterm infant’s mouth before diapering. The nurse realizes that non-nutritive sucking is a self-soothing and oxygen-conserving infant self-care behavior. Nurses sense that an infant’s overall well-being needs attention. They use caring ethics that treat the child as a person whose self-soothing abilities matter. Nurses apply their personal self-knowledge as they realize how they would wish to be treated if in the infant’s position. Swanson’s caring theory described five caring processes (Box 13.2).

Caring is one of nursing’s four core values along with diversity, integrity, and excellence (National League for Nursing [NLN], 2010). Caring is a significant and necessary quality for nursing practice. The NLN (2007) defines caring as “promoting health, healing and hope in response to the human condition.” Not only do nurses care for individuals, families, and communities, but they also need to care for each other and themselves. A tool that can be used by nurses to care for themselves and one another is the Commitment to My Cowork- ers pledge from Creative Health Care Management (Box 13.3). The goal is that the group accepts the commitment as the unit’s working philosophy. The caring commitment has be- havioral expectations. It provides personal ways for staff to address one another. It can help establish positive relationships in a healthy work environment.

358 CHAPTER 13 ● “ Doing For” and “ Being With”

BOX 13-2

K risten Sw anson: Five Caring Processes

1. Maintaining beliefs: Basic to nurse caring is an orientation of a “ fundamental belief in persons and their capacity to make it through events and transitions and face a future with meaning” (Swanson, 1993, p 354).

2. Knowing: The nurse strives to “ understand events as they have meaning in the life of the other.” It “ involves avoiding assumptions, centering on the one(s) cared for, thoroughly assessing all aspects of the client’s condition and reality, and ultimately, engaging the self or personhood of the nurse and client in a caring transaction” (Swanson, 1993, p 355).

3. Being with: Being emotionally present to the other. Practices include being there, enduring, listening, attending, disclosing, and not burdening.

4. Doing for: Examples of doing for include both psychomotor activities and emotional support. 5. Enabling: The nurse enables the other to practice self-care. Enabling is defined as “ facilitating

the other’s passage through life transitions and unfamiliar events” (Swanson, 1993, p 356).

2910_Ch13_351-374 06/01/15 2:02 PM Page 358

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Caring and Nurse-Family Relationships

Caring for the family is challenging, complex, and multifaceted (Benner et al, 1999; Jeon, 2004; Ward-Griffin & McKeever, 2000). It is an interdependent activity. Both the family and the nurse must actively participate as they work together to build a therapeutic rela- tionship. Nurses who think family recognize that the nurse must build the relationship and purposefully move with the family toward mutuality (Jeon, 2004). Mutuality involves col- laboration, empathy, interdependence, equality, and reciprocal trust between the nurse and the caregiver (Jeon, 2004). When nurses share positive family experience stories with peers, others can transform beliefs and learn ways family care can improve outcomes. When nurses know what families need and expect when their loved ones seek health care services, they can practice and become competent family nurses. Families of critically ill persons have many needs (e.g., information, assurance, presence, support), but their greatest need is to be an integral part of the illness experience (Eggenberger & Nelms, 2007). Nurses who think family recognize how important it is to validate the importance of family in their loved one’s care (Jeon, 2004).

Caring for Families in the Community

Financial costs have moved many health care services to shorter institutional stays and more care delivered at home by the family unit. Today, 85% of elder care is provided at home by family members—usually wives, daughters, or daughters-in-law (Ward-Griffin & McKeever, 2000). The U.S population has reached about 309 million people with expectations that it will grow to almost 440 million persons by 2050 (Shrestha & Heisler, 2011). In 1950, the older population made up 8.1% of the population, but that number will reach 20.2% in

CHAPTER 13 ● “ Doing For” and “ Being With” 359

BOX 13-3

Commitment to My Cow ork ers

As your coworker with a shared goal of providing excellent nursing care to our patients, I commit to the following:

● I will accept responsibility for establishing and maintaining healthy interpersonal relationships with you and every member of this staff. I will talk to you promptly if I am having a problem with you. The only time I will discuss it with another person is when I need advice or help in deciding how to communicate with you appropriately.

● I will establish and maintain a relationship of functional trust with you and every member of this staff. My relationships with each of you will be equally respectful, regardless of job titles or levels of educational preparation.

● I will not engage in the “3Bs” (bickering, back-biting, and blaming) and will ask you not to as well. ● I will not complain about another team member and ask you not to as well. If I hear you doing

so I will ask you to talk to that person. ● I will accept you as you are today, forgiving past problems and ask you to do the same with me. ● I will be committed to finding solutions to problems, rather than complaining about them or

blaming someone for them, and ask you to do the same. ● I will affirm your contribution to quality patient care. ● I will remember that neither of us is perfect, and that human errors are opportunities, not for

shame or guilt but for forgiveness and growth.

Compiled by Marie Manthey; used with permission of Creative Health Care Management.

2910_Ch13_351-374 06/01/15 2:02 PM Page 359

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

2050 when one in five persons will be age 65 or older. Better medical practices, technologies, and medicines mean the baby-boom population will live longer and possibly be healthier, but their chronic illnesses and disabilities still need to be managed at home.

Many in this generation will live with family or independently in communities rather than in care facilities. Home situations are less predictable and nurses who think family are aware of risks and member concerns. Families have rules for the ways things get done and family nurses know that they have less control in a family’s home and they are ready to work within family rules and values. Four distinct yet interconnected types of relation- ships are important in caring for frail elderly persons and others in their homes based on the amount of care required (Ward-Griffin & McKeever, 2000):

• Nurse-helper—The nurse gives and coordinates the majority of care; family members provide support.

• Worker-worker—The nurse teaches the family and helps the family members take increased responsibility for care based on their competence and skills.

• Manager-worker—The nurse gradually transitions from providing direct care to monitoring the family caregivers’ skills and coping.

• Nurse-patient—Family caregivers need supportive care owing to caregiver burdens.

R elationsh ip s B etw een C ommunity N urses and Families

Considerable tension can occur in nursing relationships because of (1) unclear expectations between the community nurse and the family caregiver, and (2) an increased amount of phys- ical, emotional, and intellectual labor care transferred from the nurse to family caregivers (Ward-Griffin & McKeever, 2000). Nurses who think family consider the potential caregiver role strain of providing 24-hours-a-day care and help find ways to increase support. Com- munity mental health nurses who worked with families of older people suffering from de- pression found that use of therapeutic relationships improved quality of life for the families (Jeon, 2004). Nurses who form sensitive and caring relationships have also reported increased satisfaction in their practice (Wright & Leahey, 1999).

Barriers to Caring and Nurse-Family Relationships

Many things can be barriers to providing family care and developing therapeutic relation- ships. Some barriers are intrinsic barriers and belong to the nurse (e.g., attitudes, beliefs, assumptions). Others are extrinsic (e.g., information, technology, hospital systems)—they come from outside the nurse.

Intrinsic B arriers to Caring and Individual-Nurse-Family Relationships

Intrinsic barriers include multitasking, time concerns, belief that caring cannot be learned, lack of preparation or knowledge, assumptions, and fear of emotional pain, unmanaged anxieties, and burnout.

Multitasking

Millennial learners (born 1980–1999) embrace multitasking, often making it hard to focus on one thing. Quiet contemplation and critical reflection that characterize “being with” must be intentionally cultivated so that multitasking does not become a barrier (de Ruiter & Demma, 2011; Pardue & Morgan, 2008). Nurses can cultivate a contemplative attitude

360 CHAPTER 13 ● “ Doing For” and “ Being With”

2910_Ch13_351-374 06/01/15 2:02 PM Page 360

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

by reflecting on care experiences. Responding to questions in writing is useful; here are some ideas (Idczak, 2007):

• Describe an interaction (positive and negative) you had with a family today. • What thoughts or emotions did you have while you were in the interaction? • Describe how you experienced yourself during the interaction. • Describe the emotions you noticed during the individual and family interaction. • What things about this time seem most important? • What other thoughts or feelings do you want to share?

Reflecting about experiences generates insights about self and others. Reflection is a way that nurses who have been mostly focused on “doing for” tasks can realize their need for engagement with individuals and families (Bail, 2007). Reflecting can help one think about better ways to “be with” individuals and their families.

C oncerns About Time

A stressful barrier that prevents nurses from developing individual-nurse-family relationships is the belief that there is no time to care. Some think “being with” takes extra time. Nurses who think family know that caring is an attitude, a way of being or interacting, and doesn’t always take more time. For instance, dressing changes take a certain amount of time, regardless of the caring or noncaring attitude by the nurse. Looking like one is pressed for time and hurried might be perceived as a lack of care. Both nonverbal or verbal cues are important. Nurses who think family are mindful that how they are “doing for” individuals and families expresses whether they are “being with” them. Dr. Cristina Garcia Vivar is a Spanish nurse studying ways families care for their dependent members (Box 13.4).

Th e B elief Th at C aring C annot B e L earned and a L ack of Prep aration

Another barrier is thinking that caring cannot be learned. Caring can be cultivated; students and experienced nurses can practice and learn caring behaviors. One study identified instru- mental and noninstrumental caring factors as important (Palese et al, 2011). Instrumental

CHAPTER 13 ● “ Doing For” and “ Being With” 361

BOX 13-4

Family Tree

Cristina G. Vivar, PhD, MSc, RN (Spain)

Cristina Garcia Vivar, PhD, MSc, RN, is a nursing professor at the Faculty of Nursing, University of Navarra, Spain, and serves as the Assistant Director of the Department of Community and Maternal and Child Health Care. As a graduate student of Dr. Dorothy Whyte at the University of Edinburgh, Dr. Vivar developed a keen interest in family nursing, which led her to conduct her doctoral research with families experiencing cancer recurrence. Her current program of research focuses on families caring for a dependent relative. In Spain, nursing first became integrated into universities in 1997 with a 3-year diploma degree. This has recently expanded to include bachelor, master’s, and doctoral degrees. Dr. Vivar has helped move family nursing in Spain forward through many initiatives, including organizing family nursing courses for practicing nurses; teaching family nursing courses to undergraduate and postgraduate students; supervising doctoral students conducting research in family nursing; and presenting her research in family nursing at seminars and at national and international conferences. In her current research, funded by the Spanish Ministry of Education, Dr. Vivar is examining the effectiveness of an educational intervention in Family Systems Nursing (using the Calgary Family Assessment and Intervention Models) with practicing nurses as a way to prepare more nurses to care for families in Spain.

2910_Ch13_351-374 06/01/15 2:02 PM Page 361

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

caring is described as knowledge and skills. Patients ranked these acts as the most frequent caring behaviors used. However, the same individuals said that what gives them the greatest satisfaction with nursing care is “positive connectedness.” These noninstrumental actions in- volved “being with” and include spending time, helping them understand, being patient, and involving them in care.

People must feel safe with others before positive connections can be made—a shared humanity with another person (Storr, 2010). For example, when personal thoughts, feelings, fears, and hopes are shared, one becomes vulnerable. Students can plan “being with” in ways similar to preparing for doing technical skills. First, review what has been learned about ther- apeutic communication and family connections. Next, identify positive and negative responses that might occur in a particular situation. Anticipate a variety of possible responses. Practice can help nurses recognize biases, assumptions, values, beliefs, and attitudes about situations and make needed adjustments. Reflection about experiences can transform nursing practice.

Assump tions

A major barrier to thinking family is a “know it all” attitude. If one appears arrogant or “not present,” it is unlikely that others will want to share personal thoughts or feelings. Family-focused nurses explore needs of specific family units in tailored plans of care. Nurses listen to their needs and questions before a plan is made and then the plan is made cooperatively. Nurses need answers to questions such as these:

• What is the family’s current level of well-being? • What is important to this family that relates to the goal of well-being? • What are the most important things needed at this particular time? • How can I best learn what is most needed in this situation?

Use of active listening skills will help the nurse to notice and attend to what the family views as most important. Effective listening requires the nurse to be sensitive to personal bias that may influence what is noticed or observed about the family and the things indi- viduals and family members verbalize. Preconceived notions, expectations, and ideas that say families should act in particular ways can interfere with or become barriers to the open stance necessary for family-focused care.

Identifying Personal Assumptions

All nurses have assumptions that shape what and how they notice things around them. Becoming aware of personal thoughts, bias, and prejudices can limit the negative effect of using them in practice (Johns, 1996).

Assumptions are our taken-for-granted beliefs about the world and our place within it; they seem so obvious to us as not to need to be stated explicitly. Assumptions give meaning and purpose to who we are and what we do. In many ways, we are our assumptions. So much of what we think, say, and do is based on assumptions about how the world should work and what counts as appropriate, moral action within it. . . . Ideas and actions that we regard as commonsense conventional wisdom are often based on uncritically accepted assumptions. . . . Critical thinking, at its core, is the process of hunting down and checking these assumptions. (Brookfield, 2005, pp 49–50)

Discovering one’s assumptions involves reflection. What guides decisions, actions, and choices related to a particular situation? What can be done to check the accuracy of as- sumptions? How could one learn whether ideas are true or not? Try looking at the situation from another perspective. Imagine another possible viewpoint or explanation. What might happen if you had a different assumption? Knowing oneself and cultivating authentic caring

362 CHAPTER 13 ● “ Doing For” and “ Being With”

2910_Ch13_351-374 06/01/15 2:02 PM Page 362

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

relationships means assumptions are evaluated. Take a look at the Family Circle case study in Box 13.5, then review the questions and reflect on ways a family-focused caring nurse would respond.

Fear of Personal E motional Pain and U nmanaged Anx ieties

Nurses may be uncertain about what to say in response to those who express fears or con- cerns about death (Haraldsdottir, 2011). Fear of the emotional pain linked with suffering can be a barrier. However, family interactions provide excellent opportunities to develop confidence and overcome fears (Idczak, 2007; James & Chapman, 2009/2010). At end- of-life care or other critical times, nurses may think they are unprepared to know what to say or do. Previous life experiences influence responses.Those who have difficulty with personal distress or sorrow may shy away from others but those who have wrestled with loss or grief can use their experiences to offer empathy.

Being with an individual or family at end of life can be difficult. Using reminiscing to explore life experiences can be very useful at these times. One of this book’s editors recalls a spontaneous review with six adult grandchildren as they stood around their grandmother’s bedside for several hours while she was dying. The shared stories and

CHAPTER 13 ● “ Doing For” and “ Being With” 363

BOX 13-5

Family Circle

Jason, a married middle-aged father of three grade-school-age children, has decided to move his mother into the guest room in his home. Over the past few months, Jason has observed that his mother is having increased difficulty in her ability to care for herself in her home. She has been having trouble managing her multiple medication regimen and has had increased difficulty with mobility. She has become frail since the death of his father 1 year ago. Jason is afraid she will fall and have no one there to help. He expects his two siblings would be happy to contribute financially to help offset the expense of needed home modifications. He thinks they would rather pay for things like safety rails in the bathrooms and other miscellaneous expenses of the move, rather than see her move to a nursing home. He knows that his mother is happier living with family than with strangers and thinks she gets better care from family members. She could develop a closer relationship with their grandchildren and would want to contribute to child care when needed. This arrangement would allow him to fulfill his family obligation to care for her, just as his mom cared for him as a child. Besides, he does not think he could ever live down the guilt that he would experience if he put his mother in a nursing home.

1. What assumptions— explicit and implicit— do you think Jason is operating under in this situation? List as many as you can, then compare your list with that of a peer.

2. Of the assumptions you’ve listed, which ones could Jason check by simple research and inquiry? What things would he need to do?

3. Give an alternate interpretation of this scenario— a version of what is happening that is consistent with the events described, but that you think Jason would disagree with.

4. What barriers do you perceive for yourself as a nurse cultivating a family-based caring relationship in this home-care situation?

5. As a nurse in this home-care situation, discuss in a small group how you could enhance relationship-based care through “ doing for” this family.

6. As a nurse in this home-care situation, discuss in a small group how you could enhance relationship-based care through “ being with” this family.

7. Discuss the new thoughts this chapter has offered you in caring for this family. 8. Discuss the new thoughts from this chapter you have learned about caring for yourself as a

nurse and a person.

2910_Ch13_351-374 06/01/15 2:02 PM Page 363

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

memories about their grandmother caused them to laugh and cry together. The nurse was present, but in the background. If hearing is the last sense to go, then this grandmother faced her dying encircled by love knowing her life was important to her granddaughters.

Nurses might believe that a cheerful and upbeat attitude is better than engaging in the emotional experience. They sometimes think that treating critical situations as if they were normal is the best approach, but that is rarely the case (Haraldsdottir, 2011). Individuals and families appreciate sensitive responses to their unique personal needs. They often need someone to “be with” them during difficult times, even if this means sitting silently or using touch as a signal of care. If nurses compartmentalize or wall off their feelings, it could be that they block the reciprocity needed for a deeply caring relationship (Gerow et al, 2010).

Fear of B urnout

Nurses may also fear that caring too much will cause them to “burn out.” However, re- search about nurses’ experiences shows the opposite to be true—engaging with individuals and families is viewed as meaningful (Gerow et al, 2010; Johnston & Scholler-Jaquish, 2007). Nurses who believe they make a difference tend to be more satisfied with their work and have more positive responses when human connections are made (James & Chapman, 2009/2010). A nursing student wrote a reflection that said:

The nursing internship enhanced my understanding about what it means to be a nurse by doing hands on nursing work full-time. Now, I really grasp that nursing is fundamentally caring for someone. The way my mind works, I always think about nursing as treating patients with highly skilled medical interventions. Diagnostics. Assessments. All that jazz. But a nurse per- forms so many functions of care. Whether it is administering medication or answering a call light to grab a patient something to drink. A nurse is so many things: a hybrid of a medical professional, a teacher, a hotel concierge, and so on. It is not so much the highly trained skills that patients appreciate, it is the things you do on instinct, your bedside manner that makes the biggest difference to a patient.

Note how this student’s experience involves “doing for” and “being with” persons. This student understands that how one does things—one’s “bedside manner”—is what truly makes a difference for individual and family experience. Another student writes:

Despite all of the technical skills in nursing, the one part of nursing care that has inspired me the most has been the patient-to-nurse interaction. Just listening to patients’ stories, giving them the love, support, and care they need, has been an incredible experience. I find it amazing how many people share their life story. People trust us, as nurses, and they can open up and share how they are feeling. I’ve been touched by so many people, young and old, and this has made me a more loving and compassionate person.

This reflection illuminates how nursing students learn the “being with” of nursing; they become self-aware and develop identity as a nurse and a person (Idczak, 2007). Human connections help nurses know they make a difference and affirm that nursing is a good career choice.

Ex trinsic B arriers to Caring and Individual-Nurse-Family Relationships

Extrinsic barriers to caring and the individual-nurse-family relationships include outcomes- based work, understaffing, the use of technology, cultural or social barriers, modeled incivility, lack of cultural competence, and labeling.

364 CHAPTER 13 ● “ Doing For” and “ Being With”

2910_Ch13_351-374 06/01/15 2:02 PM Page 364

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

O utcomes- B ased W ork

An extrinsic barrier to caring is the demand for task-based work. The value of nurses as em- ployees is often measured in tasks completed and outcome achievement. Emphasis on priority setting keeps nurses focused on tasks and “doing for.” Prioritization aims to improve effi- ciency and avoid errors. These goals are often measured by spending less time or money and using fewer staff members while ensuring safety, competency, and regulatory compliance.

In the current outcomes-based context, caring and “being with” those seeking care often seems less important because that work is less visible and difficult to measure or quantify. Its critical importance is often overlooked. “Doing for” can be measured. Stress on “doing for” might explain why students view physically based caring behaviors (e.g., patient monitoring, completing delegated tasks) as most important (Khademian & Vizeshfar, 2007). “Being with” often occurs in isolated settings and is less easily observed by others or counted as work done.

Health care organizations use tools to measure outcomes. Press Ganey is a company that works with health care organizations to help them innovate and become high-perfor- mance organizations (Press Ganey Associates, 2012). Performance is based on the collection and analysis of data to assess patient satisfaction. Their philosophy says that if positive patient experiences are provided, then positive clinical and financial outcomes will follow. High Press Ganey scores are viewed as a reflection of excellence in health care delivery. Press Ganey scores are widely accepted but they only measure perception of nursing care activities that are customer service oriented (e.g., respectfulness, giving clear directions, length of wait time for service). These fail to capture the important relational outcomes of individual-nurse-family relationships.

U nderstaf f ing

Understaffing can also be a barrier to caring or “being with” because it places demands on the nurses’ time. Inadequate staffing is stressful and distracts from fully meeting less visible needs. The Magnet hospital movement, a recognition program run by the American Nurses Credentialing Center (2012), distinguishes nursing excellence. The program somewhat ad- dresses the low staffing barrier by recognizing that appropriate staffing—with a highly edu- cated staff—makes differences. Adequate staff improves outcomes, work satisfaction, and the likelihood of staying employed in nursing.

Th e U se of Tech nology

Technology can also be a barrier to “being with” others. Care providers focused on com- puters, digital screens, or equipment may pay less attention to care recipients, so care seekers think their needs and questions are less important. If communication via text messages or Facebook is preferred over face-to-face interactions, the value of personal relationships can be unknown, forgotten, or minimized.

C ultural or Social B arriers

Nurses may have personal or familial experiences that interfere with caring behaviors. Some families are less communicative or less demonstrably affectionate. If one has not ex- perienced caring family relationships or seen caring behaviors modeled, it may be hard for them to use them. Educational practices can also be a deterrent. If competition among stu- dents rather than cooperation is promoted, introverted students might choose to be less visible or isolate themselves. Students compete to access specific clinical experiences, attain a job, or move up the ladder. Students who lack family experiences with valued caring relationships might avoid “being with” others (Young, Hayden-Miles, & Brown, 2010).

CHAPTER 13 ● “ Doing For” and “ Being With” 365

2910_Ch13_351-374 06/01/15 2:02 PM Page 365

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Modeled Incivility

Another extrinsic barrier is incivility. Students who see teachers as autocrats, dictatorial, or uncivil may mimic similar behavior in clinical practice (Clark & Davis Kenaley, 2011). How can students learn caring in an uncaring environment? Nursing actions should incor- porate others, promote work as partners, employ coordinated efforts, and use collaborative environments. Academic incivility (e.g., rudeness, being discourteous) is behavior that dis- rupts the teaching-learning process (Feldman, 2001). Horizontal violence describes the phenomenon of nurses’ disrespect for each other. All forms of incivility are barriers to caring, regardless of where it occurs.

L ack of C ultural C omp etence

Not understanding cultural differences can be a barrier to family-focused caring. Cultural constructs of cultural awareness, humility, knowledge, skill, and desire were discussed in Chapter 6. Knowledge about cultural differences can be institution based and is an ongoing learning process. Cultural competence implies:

• The nurse understands diverse worldviews, avoids stereotyping and misapplying sci- entific knowledge, and applies knowledge so care quality and health outcomes are improved (Fernandez & Fernandez, 2012).

• Nurses have cultural beliefs, practices, and flexibility that are respectful of others. Their actions involve listening, learning about unique qualities and situations, and providing care that supports health behaviors and eliminates barriers (Fernandez & Fernandez, 2012).

Th e Practice of L abeling

Labels for persons or families (e.g., the colon resection in room 308, a fresh open heart, overinvolved, demanding) erect barriers to caring. Labeling depersonalizes and causes nurses to be distant and detached (Barry & Purnell, 2008; Ironside, Diekelmann, & Hirschmann, 2005). Applying labels may influence the attention given or the ways things are heard. Labels project interpretations or meanings that might be false. Respect implies acceptance without labels. It is important not to label people by their disease (e.g., using the term diabetic instead of person with diabetes) and consider the household and com- munity needs that influence their care needs (Box 13.6).

“ Doing For” and “ Being With” Means Knowing Oneself

Self-knowing or self-care are prerequisites to therapeutic relationships. One needs to iden- tify and understand personal emotions. Knowing oneself is fundamental to maintaining personal health, empathizing with others, and having effective therapeutic relationships. Knowing oneself is developed through reflective self-discovery (Box 13.7).

B ecoming a Reflective Practitioner

Reflecting on one’s practice experience is a hallmark of being a professional (Schon, 1983). It is an essential skill that helps nurses connect previous learning and experience with current actions and outcomes. Reflection helps one construct meaning from experiences, interpret events, and identify important factors in complex situations. It can help one understand and make sense of experiences and events. Reviewing situations can increase

366 CHAPTER 13 ● “ Doing For” and “ Being With”

2910_Ch13_351-374 06/01/15 2:02 PM Page 366

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

CHAPTER 13 ● “ Doing For” and “ Being With” 367

BOX 13-6

Evidence-Based Family Nursing

Diab etes: A Family Matter

The Family Health Model (FHM) was used to devise a plan for a toolkit that could be used in the Appalachian region of the United States to prevent type 2 diabetes and its complications. This most rural area follows the Appalachian Mountains from north to south, and includes 420 counties and parts of 13 states; only West Virginia is included in its entirety. Although type 2 diabetes is known to be preventable and manageable, it continues to spread across the nation and world. This region is recognized as part of what is called the “ diabetes belt,” and the disease is of epidemic proportions in a largely Caucasian population. This area has a disproportionate level of poverty and its associated problems compared to the rest of the nation. Theory was used to guide thinking about the research conducted as part of this focused work and to think about the consequences and needs of people living with risks for type 2 diabetes in this region. The contextual, functional, and structural domains of the FHM proved useful for thinking about the complex interactions faced by families as they live with and try to manage the disease in their homes and social settings in their communities (Denham, 2003). As family members live in their households, they share established routines and habits that can place members at risk for this disease. This region’s high rates of obesity and physical inactivity are just two social factors that put rural residents at risk. The spread of type 2 diabetes is occurring at increasingly younger ages, and disease complications are widespread. Over many years, numerous research studies were conducted to learn more about this regional problem and to better understand the family experience of living with the disease. The toolkit devised uses community volunteers to promote healthy lifestyles, increase knowledge about the importance of active living, and spread knowledge about the disease. A variety of materials were created (e.g., a brochure series, plays, films, fotonovellas, activities) to spread culturally sensitive messages to rural Appalachian residents. An evaluation project and other research that has studied parts of this toolkit has shown that it is culturally sensitive for use with the target audience. The toolkit, Diabetes: A Family Matter and the Family Health Model, can be viewed online at < www.diabetesfamily.net> .

Source: Denham, S. A. (2011). Diabetes: A family matter. In E. K. Svavarsdottir & H. Jonsdottir (Eds.), Family nursing in action (pp 309–332). Reykjavik, Iceland: University of Iceland Press.

BOX 13-7

Q uestions for Self-Discovery

These questions offer some guidance for personal self-reflection and thinking about your relationships with peers, coworkers, and other professionals. Reflection can help nurses prepare to think family and offer family-focused care. Reflect on answers to these questions to better understand yourself:

● How do I feel cared for? ● How do I express my care for others? ● What are the areas of myself that do not feel nurtured? ● How do I replenish myself? ● How does self-replenishment relate to the leadership service of others? ● What makes me happy? ● What are my personal routines and rituals for letting go of work/obligations at the end of the day? ● Am I growing healthier in body, mind, and spirit? ● Am I helping others to grow professionally?

Source: Pipe, T. B., & Borst, J. J. (2009). Mindful leadership as healing practice: Nurturing self to serve others. International J ournal for Human Caring, 1 3 (2), 35–39.

2910_Ch13_351-374 06/01/15 2:02 PM Page 367

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

awareness of personal patterns or experiences and reveal how single events are part of a whole. One’s perspective is only one of many possible ways to see a situation. Nurses can examine perceptions as they reflect on experiences and this learning has the potential to transform one’s practice.

Reflection can be cultivated and nurtured. As the nurse reviews what went right or wrong, what is and is not known get clearer. These viewpoints offer new ways to consider how to do things differently next time. Reflecting on good and bad experiences can prevent repeating similar mistakes. It is a way to identify things that really matter in nursing practice. Use the following questions to guide your reflections:

• What confused, surprised, or worried me today? • What do I now understand for the first time? • What am I still wondering about or questioning? • Who did I disagree with today and why? • What did I do today that makes me proud? • In what ways did I practice “doing for” and “being with” today?

These questions can stimulate reflective thinking, a process (i.e., noticing, interpreting, responding, reflecting) important for thinking like a nurse (Tanner, 2006).

Nurses engage in public reflection all the time as they give reports at shift changes. When stories are shared about challenging, standout, or memorable experiences, reflection occurs. Reviewing stories can help nurses make sense of complex situations. They can help one ask questions and rehearse behaviors for doing things differently next time. Debriefings following a critical incident, a clinical experience, or a simulation scenario are reflective experiences. As participants talk about what did and did not happen, listeners see situations differently. Ideas can be reconstructed in meaningful ways. These kinds of activities enable lifelong learning, earmarks of the professional nurse (Fig. 13.3).

Taking Care of Oneself

The work of nursing—caring for others—demands that nurses stay fit. Physical, mental, emotional, and spiritual fitness are all important. Nurses cannot help anyone beyond where they themselves are at a particular point. Self-esteem must be maintained at a

368 CHAPTER 13 ● “ Doing For” and “ Being With”

FIGURE 13 -3 Reflections and debriefing are important experiences for nurses.

2910_Ch13_351-374 06/01/15 2:03 PM Page 368

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

healthy level. Virginia Satir (1988) in her classic book, The New Peoplemaking, talks about the importance for those in helping professions to maintain a full “pot of self- esteem.” Nurses need to understand what it takes to fill the “pot” as well as what depletes it. Use of reflection throughout a career can help nurses stay in tune with things and check their caring-potential temperature.

Doing a Personal Assessment

It is possible to be a member of a caring profession and neglect oneself. Self-care needs to be intentional, just like caring for others. It might mean conducting a personal inventory, taking stock of one’s physical and emotional temperature. This may be as simple as asking oneself, Do I feel rested? Did I get enough sleep last night to keep me energized for the day or do I need to be gentle with my expectations for myself today? Am I eating healthy? Am I exercising? Do I have good work-family balance? Do I maintain healthy relationships? Taking stock also means knowing one’s strengths so they can be built upon and limitations so they can be strengthened. What energizes me and makes me feel good about myself? Questions about what characterizes one’s inner source of energy or happiness are useful (Box 13.8). Lack of self-care can impede or threaten one’s ability to care for others.

Regular reflection about self-care helps develop the awareness needed to be a caring person (Wilson & Grams, 2007). A nurse involved in a structured self-care assessment noted: “When I care for myself, I ultimately help others. My cup is filled so I can fill other cups” (Wilson & Grams, 2007, p 19). The nurse who regularly cares for self embraces car- ing as a way of being. Another nurse stated, “Caring as a way of being rather than doing has been a new way of thinking. . . . I believe that being caring encompasses doing caring” (Wilson & Grams, p 19).

Developing Self-Care Goals

Following a personal assessment, self-care goals, along with strategies to meet identified goals, can be developed (Wilson & Grams, 2007). This step helps develop positive ways to care for self. Finding a positive role model or a clinical mentor can help in developing effec- tive coping skills. Some nurses use faith and spirituality as ways to manage grief, stress, or emotional upheaval in order to strengthen themselves (Gerow et al, 2010). Personal caring rituals can be used—small acts of doing for others can ground everyday nursing

CHAPTER 13 ● “ Doing For” and “ Being With” 369

BOX 13-8

Q uestions for Ex ploring Sources of Strength, Meaning, and Joy

Q uestions such as the following can provide useful direction for personal reflections:

● What brought me to nursing/health care? ● What brings me strength? ● What/who inspires me? ● Where do I find joy and meaning? ● What legacy do I hope to leave with my leadership influence? ● What rituals can I build into my daily routine that will help me remember my connection with

self and source?

Source: Pipe, T. B., & Borst, J. J. (2009). Mindful leadership as healing practice: Nurturing self to serve others. International J ournal for Human Caring, 1 3 (2), 35–39.

2910_Ch13_351-374 06/01/15 2:03 PM Page 369

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

practice. One can be comforted by doing familiar tasks, things that can involve “doing for” and “being with.” Each nurse needs to find favorite ways to care for mind, body, spirit, and relationships as intentional care for self (Brown, 2009). A simple way to care for self might involve being mindful: “Whatever I do first, that’s what gets done.” This statement reflects the realization that life is busy and complex—people get pulled in many directions. Whatever one chooses to do first in the day may be the only guaranteed thing done that day. It illu- minates the importance of setting priorities when doing for oneself. For example, taking a walk first thing in the morning ensures that exercise is accomplished and reflective time occurs. Pick one’s “first things” wisely—be intentional; it may be all one can do that day.

Slow ing Dow n

Being busy is a hallmark of contemporary nursing practice (Olson, 2009). But being busy or looking busy often precludes engaging others in meaningful ways. Clearing a space for authentic relating with others—that is, without pretenses of any kind—is an attitude. Slow- ing down the busyness of daily living opens a space for anticipatory thinking—or, thinking about what might be coming next—and reflecting that characterizes expert nursing prac- tice. One practical way to reduce one’s busyness is to simply pause before saying “yes” to a request or agreeing to a new project. “Let me think about this for a bit—I’ll get back to you” is all that needs to be said initially. This reply provides the freedom to fully examine one’s reaction to the new activity—rather than saying “yes” out of habit. Pausing allows time for a cost-benefit analysis to be done before taking on more work.

Learning to slow down can be particularly challenging. E-mail, instant messaging, pagers, cell phones, and other emerging technologies seem to demand immediate response. Communication in health care is often high stakes, time sensitive, and centers on the preser- vation of life, health, and human dignity (Pipe & Borst, 2009). Being mindful in practice can help nurses attend to what is happening, being present in the moment. Mindfulness is paying attention and slowing down to pay attention, to consider being given a clinical nurs- ing assignment with many unknowns and uncertainties. Mindfulness means avoiding automatic responses and stopping to take a breath and organize a plan. Mindfulness (e.g., aliveness, self-awareness, self-control) can be developed through training (Scheick, 2011). Breathing exercises, meditation, and yoga are approaches to practicing mindfulness. These actions can help reduce stress, increase healing, and relieve suffering.

Developing an Aesthetic Attitude

Aesthetics involves paying attention to the things that move one emotionally—things that are beautiful, thought provoking, or personally satisfying. Aesthetics reflects the art of nursing—recognizing and holding dear the human experience of illness, health, and healing (Leight, 2002). Cultivating this appreciation implies grasping the full scope of human po- tential while being open to new possibilities. Paying attention to human experience means seeing the person and not a diagnosis. Developing an aesthetic attitude requires listening to intuition, an inner voice about what matters (Barry & Purnell, 2008).This reflection may occur when obtaining a health history, debriefing after a critical incident, or reading a qual- itative report that describes a particular phenomenon or social process. Photos, film, paint- ings, sculpture, poetry, music, and other art forms tell stories that can be reflected upon and interpreted. What is the artist trying to say about what matters in the experience of being human? Developing one’s creative self may feel risky to the nurse grounded in science or caught up in the tasks of “doing for” individuals and families. Nurses need aesthetics; this reflection is the nourishment that inspires and helps connect with core beliefs (Box 13.9).

370 CHAPTER 13 ● “ Doing For” and “ Being With”

2910_Ch13_351-374 06/01/15 2:03 PM Page 370

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Chapter Summary

The core of nursing work is caring—in this instance, family-focused caring. Caring relation- ships are essential to professional nursing practice and require personal strength. Nurses might find caring relationships challenging when personal experiences conflict with what is met in practice. Nurses can develop the inner strength needed to watch families struggle with issues. They can learn ways to support them as they handle unfamiliar situations. Nurses can use intentionally focused efforts to build skills and confidence for working with family units. Nurses who think family use their roles to provide safe and competent care as they “do for” and “be with” others. Family nurses collaborate with family unit members as they establish new life patterns or make sense of critical and unexpected life events. Nurses can use self- care actions to prepare them to “do for” and “be with” those to whom they give care.

REFERENCES

American Association of Colleges of Nursing. (2008). Essentials for baccalaureate education. Washington, DC: Author.

American Nurses Credentialing Center. (2012). Program overview. Retrieved from American Nurses Credentialing Center Web site: http://nursecredentialing.org/Magnet/ProgramOverview.aspx

Bail, K. S. (2007). Engaging nurses in patient care: Clinical reflection by a student nurse. Contempo- rary Nurse, 25, 156–162.

Barry, C. D., & Purnell, M. J. (2008). Uncovering meaning through the aesthetic turn: A pedagogy of caring. International Journal for Human Caring, 12(2), 19–23.

Benner, P., Hooper-Kyriakidis, P., & Stannard, D. (1999). Clinical wisdom and interventions in critical care: A thinking-in-action approach. Philadelphia: W. B. Saunders.

Benner, P., & Wrubel, J. (1989). The primacy of caring: Stress and coping in health and illness. Menlo Park, CA: Addison-Wesley.

Brookfield, S. D. (2005). Overcoming impostorship, cultural suicide, and lost innocence: Implications for teaching critical thinking in the community college. New Directions for Community Colleges, 130(Summer), 49–57.

Brown, C. J. (2009). Self-renewal in nursing leadership: The lived experience of caring for self. Journal of Holistic Nursing, 27, 75–84. doi:10.1177/0898010108330802

Clark, C. M., & Davis Kenaley, B. L. (2011). Faculty empowerment of students to foster civility in nursing education: A merging of two conceptual models. Nursing Outlook, 59, 158–165.

CHAPTER 13 ● “ Doing For” and “ Being With” 371

BOX 13-9

Aesthetic Reflection

On the Web, find an image of the painting by Frida Kahlo entitled The B rok en Column or one by Rufino Tamayo entitled The Family. You can enter the artists’ names and painting titles into the search engine. While viewing the image, think about these questions and suggestions:

● If you could tell a story about the person/people in this painting, what would you say? ● What does this painting tell about being human? ● What one word would you use to describe this painting? Why? ● What feelings does this painting evoke in you? ● What do you think the title of this painting means? ● Describe any emotions this painting evokes. ● What do you think the artist is trying to say in this painting? ● What does this painting say to you personally?

2910_Ch13_351-374 06/01/15 2:03 PM Page 371

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Coetzee, M. (2004). Learning to nurse children: Towards a model for nursing students. Journal of Advanced Nursing, 47(6), 639–648.

Denham, S. A. (2003). Family health: A framework for nursing. Philadelphia: F. A. Davis. Denham, S. A. (2011). Diabetes: A family matter. In E. K. Svavarsdottir and H. Jonsdottir (Eds.),

Family nursing in action (pp 309–332). Reykjavik, Iceland: University of Iceland Press. de Ruiter, H. P., & Demma, J. M. (2011). Nursing: The skill and art of being in a society of multi-

tasking. Creative Nursing, 17(1), 25–29. doi:10.1891/1078-4535.17.1.25 Eggenberger, S. K., and Nelms, T. (2007). Being family: The family experience when an adult member

is hospitalized with a critical illness. Journal of Clinical Nursing, 16, 1618–1628. Feldman, L. J. (2001). Classroom civility is another of our instructor responsibilities. College

Teaching, 49, 137–140. Fernandez, V., & Fernandez, K. (2012). Transcultural nursing: Cultural competence. Retrieved

January 23, 2012 from Transcultural Nursing Web site: http://www.culturediversity.org/cultcomp.htm Gerow, L., Conejo, P., Alonzo, A., Davis, N., Rodgers, S., & Williams Domian, E. (2010). Creating

a curtain of protection: Nurses’ experiences of grief following patient death. Journal of Nursing Scholarship, 42, 122–129. doi:10.1111/j.1547-5069.2010.01343.x

Haraldsdottir, E. (2011). The constraints of the ordinary: “Being with” in the context of end-of-life nursing care. International Journal of Palliative Nursing, 17(5), 245–250.

Hartrick Doane, G. A. (2002). Beyond behavioral skills to human-involved processes: Relational nursing practice and interpretive pedagogy. Journal of Nursing Education, 41, 400–404.

Henderson, V. (1991). The nature of nursing: A definition and its implications for practice, research, and education. Reflections after 25 years. New York: National League for Nursing.

Idczak, S. E. (2007). I am a nurse: Nursing students learn the art and science of nursing. Nursing Education Perspectives, 28(2), 66–71.

Ironside, P. M., Diekelmann, N., & Hirschmann, M. (2005). Students’ voices: Listening to their experiences in practice education. Journal of Nursing Education, 44, 49–52.

James, A., & Chapman, Y. (2009/2010). Preceptors and patients—the power of two: Nursing student experiences on their first acute clinical placement. Contemporary Nurse, 34(1), 34–47.

Jeon, Y-H. (2004). Shaping mutuality: Nurse-family caregiver interactions in caring for older people with depression. International Journal of Mental Health Nursing, 13, 126–134.

Johns, C. (1996). Visualizing and realizing caring in practice through guided reflection. Journal of Advanced Nursing, 24, 1135–1143.

Johnston, N. E., & Scholler-Jaquish, A. (Eds.). (2007). Meaning in suffering: Caring practices in the health professions. Interpretive studies in healthcare and the human sciences (Vol. 6). Madison: University of Wisconsin Press.

Karlsson, M., & Bergbom, I. (2010). Being cared for and not being cared for—A hermeneutical interpretation of an autobiography. International Journal for Human Caring, 14(1), 58–65.

Khademian, Z., & Vizeshfar, F. (2007). Nursing students’ perceptions of the importance of caring be- haviors. Journal of Advanced Nursing, 61(4), 456–462. doi:10.1111/j.1365-2648.2007.04509.x

Leight, S. B. (2002). Starry night: Using story to inform aesthetic knowing in women’s health nursing. Journal of Advanced Nursing, 37(1), 108–114.

National League for Nursing. (2007). NLN core values. Retrieved from National League for Nursing Web site: http://www.nln.org/aboutnln/corevalues.htm

National League for Nursing. (2010). Outcomes and competencies for graduates of practical/voca- tional, diploma, associate degree, baccalaureate, master’s practice doctorate, and research doctorate programs in nursing. New York: Author.

Nightingale, F. (1992). Notes on nursing: What it is and what it is not. Commemorative edition. Philadelphia: J. B. Lippincott.

Olson, M. E. (2009). The “millennials”: First year in practice. Nursing Outlook, 57, 10–17. doi:10.1016/j.outlook.2008.06.001

Palese, A., Tomietto, M., Suhonen, R., Efstathiou, G., Tsangari, H., Merkouris, A., & Papastavrou, E. (2011). Surgical patient satisfaction as an outcome of nurses’ caring behaviors: A descriptive and correlational study in six European countries. Journal of Nursing Scholarship, 43, 341–350. doi:10.1111/j.1547-5069.2011.01413.x

372 CHAPTER 13 ● “ Doing For” and “ Being With”

2910_Ch13_351-374 06/01/15 2:03 PM Page 372

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

Pardue, K. T., & Morgan, P. (2008). Millennials considered: A new generation, new approaches, and implications for nursing education. Nursing Education Perspectives, 29(2), 74–79.

Pipe, T. B., & Borst, J. J. (2009). Mindful leadership as healing practice: Nurturing self to serve others. International Journal for Human Caring, 13(2), 35–39.

Press Ganey Associates. (2012). Our mission. Retrieved from Press Ganey Web site: http://www. pressganey.com/aboutUs/ourMission.aspx

Satir, V. (1988). The new peoplemaking. Mountain View, CA: Science and Behavior Books. Scheick, D. M. (2011). Developing self-aware mindfulness to manage countertransference in the

nurse-client relationship: A developmental and evaluation study. Journal of Professional Nursing, 27(2), 114–123. doi:10.1016/j.profnurs.2010.10.005

Schon, D. A. (1983). The reflective practitioner: How professionals think in action. New York: Basic Books.

Shrestha, L. B., & Heisler, E. J. (2011). The changing demographic profile of the United States. Con- gressional Research Service #7-5700, CBS Report for Congress. Retrieved February 27, 2012 from http://www.fas.org/sgp/crs/misc/RL32701.pdf

Storr, G. B. (2010). Learning how to effectively connect with patients through low-tech simulation scenarios. International Journal for Human Caring, 14(2), 36–40.

Swanson, K. M. (1993). Nursing as informed caring for the well-being of others. Image: Journal of Nursing Scholarship, 25(4), 352–357.

Tanner, C. (2006). Thinking like a nurse: A research-based model of clinical judgment in nursing. Journal of Nursing Education, 45(6), 204–211.

Verghese, A. (2009). Cutting for stone. New York: Vintage Books. Ward-Griffin, C., & McKeever, P. (2000). Relationships between nurses and family caregivers:

Partners in care? Advances in Nursing Science 22(3), 89–103. Watson, J. (1985). Nursing: Human science and human care. New York: National League for Nursing. Watson, J., & Foster, R. (2003). The Attending Nurse Caring Model®: Integrating theory, evidence

and advanced caring-healing therapeutics for transforming professional practice. Journal of Clinical Nursing, 12, 360–365.

Wilson, C. B., & Grams, K. (2007). Reflective journaling and self-care: The experience of MSN students in a course on caring. International Journal for Human Caring, 11(1), 16–21.

Wright, L. M., & Leahey, M. (1999). Maximizing time, minimizing suffering: The 15-minute (or less) family interview. Journal of Family Nursing, 5, 259–274. doi: 10.1177/107484079900500302

Young, P., Hayden-Miles, M., & Brown, P. (2010). Narrative pedagogy. In L. Caputi (Ed.), Teaching nursing: The art and science (2nd ed., Vol. 2, pp 804–836). Glen Ellyn, IL: College of DuPage Press.

CHAPTER 13 ● “ Doing For” and “ Being With” 373

2910_Ch13_351-374 06/01/15 2:03 PM Page 373

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

2910_Ch13_351-374 06/01/15 2:03 PM Page 374

Denham, Sharon, et al. Family Focused Nursing Care, F. A. Davis Company, 2015. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/mnsu/detail.action?docID=1963709. Created from mnsu on 2022-06-02 03:07:26.

C o p yr

ig h t ©

2 0 1 5 . F

. A

. D

a vi

s C

o m

p a n y.

A ll

ri g h ts

r e se

rv e d .

patient losses associated with chronic illness aided some families with the final LST decision.1,5 Tilden and re- searchers1 observed that family members of patients with acute illnesses or injuries recognized futility of treatment abruptly after a period of denial and cognitive dissonance. Thus, family experiences may be different if the patient has a sudden, unexpected illness versus an exacerbation of a chronic illness.

Researchers have demonstrated that the withdrawal of LST process occurs within a family context. Usually multi- ple family members are involved in making LST deci- sions.1,5,10,11 Although one family member may facilitate the family decision-making process,9 most families pull together and decide as a group.5 Family decision making about LST is a complex process.1,5,10,11 Tilden and researchers1 found that families making withdrawal of LST decisions moved through four phases that included recognition of futility, coming to terms, shouldering the surrogate role, and facing the question. Several factors have been found to influence family members’ decisions related to withdrawal of LST and include: a poor expected quality of life,1,5,12,13 a poor prog- nosis,5,12,13 the patient’s current level of suffering,1,5,12–14 and previously discussed advance directives.1,9–13 Participating in end-of-life decisions related to withholding and with- drawing LST is quite a burden for families.1,5,15 Family mem- bers have described participating in the process of with-

Introduction

MOST OF THE PATIENTS who die in U.S. hospitals do so un-der circumstances where decisions need to be made about how long to pursue life-extending treatments.1 The majority of end of life decisions are made by patients’ fam- ily members as patients are often too critically ill to partici- pate in decision making.2–5 Approximately 1 in 5 patients die in critical care units2 with over 90% of deaths in critical care preceded by decisions to withhold or withdraw life-sustain- ing therapies.7,8 Health care providers collaborate with pa- tients’ families as decisions are made to limit treatment and care for both patients and their families during the dying process. This study addresses an important problem that even though withdrawal of life-sustaining therapy (LST) oc- curs commonly in critical care units, little is known about the family experience during this process. Better under- standing of the experience of families will guide interven- tions for these vulnerable patients and their families.

Significant contributions have been made to under- standing families as they participate in end-of-life decision making. Important information has been found related to the patient’s illness context, family context, and family and health care provider interactions. The nature of the pa- tient’s illness may influence the family decision-making process related to LST. For example, prior experiences of

JOURNAL OF PALLIATIVE MEDICINE Volume 11, Number 8, 2008 © Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2008.0015

In Their Own Time: The Family Experience during the Process of Withdrawal of Life-Sustaining Therapy

Debra Wiegand, R.N., M.B.E., Ph.D., CCRN, FAAN

Abstract

Withdrawal of life-sustaining therapy (LST) occurs commonly in critical care units, yet little is known about the family experience with this process. The purpose of this study was to understand the lived experience of families participating in the process of withdrawal of LST from a family member with an unexpected, life- threatening illness or injury. A hermeneutic phenomenological approach was used as nineteen families were interviewed and observed. Within and across family analyses were conducted. Methodological rigor was es- tablished and redundancy was achieved. The categories that evolved from the data included: this happens to other families, time to understand the severity of the illness or injury, time to see if health would be restored, riding a roller coaster, family readiness: willingness to consider withdrawal of LST as a possible option, one step at a time, family readiness: time to make a decision, the family will go on, and waiting for a miracle. The family experience participating in the process of withdrawal of LST happened for families “in their own time.” The results of this study have important implications for clinical practice and future research.

1115

Baltimore, Maryland.

WIEGAND1116

drawal of LST as difficult, intense, painful, overwhelming, devastating, and traumatic.1

Interactions between families and health care providers are important when making end of life decisions. Trust be- tween families and health care providers is crucial. Mutual trust between families and health care providers is especially important in the context of making LST decisions.16 Swigart and colleagues9 reported that families were unwilling to forgo LST when there was not trust between the family and the patient’s physician. Norton and researchers17 found that trust eroded when family members received misinformed or mixed messages about their critically ill family member.

Families have reported being helped with end-of-life de- cisions by nursing and physician behaviors such as: frequent and clear communication, clarification of family roles, col- laborative (shared) decision making, facilitating family con- sensus, accommodating family grief and consultation with clergy.1,5,10,12,13,17,18 Families were also helped when health care providers were direct, honest, and realistic as they guided and facilitated the family through the withdrawal of LST process.1,17

The purpose of this study was to understand the lived ex- perience of families participating in the process of with- drawal of LST from a family member with an unexpected, life-threatening illness or injury. This study differs from pre- vious investigations in that families were studied prospec- tively as they participated in the process of withdrawal of LST, the study focused on families with an acutely ill or in- jured family member, and the study was conducted from a family perspective, thus including multiple family members.

Method

A hermeneutic phenomenological approach was used to study families as they participated in the process of with- drawal of LST. This study sought to answer the question: What do families experience during the process of with- drawal of LST from a family member with an unexpected, life-threatening illness or injury? Van Manen’s19,20 method- ology for conducting phenomenological research was used to guide the investigation. Families were interviewed and observed over a period of time (days to weeks) as they in- teracted with the patient, with each other, sat in family wait- ing rooms, stood in hallways, and interacted in family meet- ings. Study procedures and an additional analysis were reported previously.18

Sample and setting

The family sample was recruited from three intensive care units (ICUs) of a single university medical center. Purposive sampling was used to obtain a diverse sample of families. Family members were considered for participation in the study if the patient was unable to participate in decision making, had an unexpected (previously healthy), life-threat- ening illness, or injury that was defined as an acute condi- tion (less than 1-month duration), necessitating hospitaliza- tion in a critical care unit, and the health care team thought that LST might need to be withdrawn. LST was defined as any therapy necessary to maintain life. Family was defined as the individuals who were participating in and experienc- ing the withdrawal of LST process. Most of the family mem- bers were, but did not need to be, related biologically.

Recruitment procedures

Families were referred to the researcher as she rounded in the ICUs. After obtaining a referral, the researcher reviewed the patient chart and spoke with the patient’s nurse to de- termine if the patient met the study criteria. Consent was ob- tained from the patient’s attending physician prior to ap- proaching the family and informed consent was obtained from each family member participating in the study. Insti- tutional Review Board approval was obtained prior to data collection.

Sequence for the investigation

The first family interviews commonly occurred in a con- ference room located close to the ICU and lasted 30–60 min- utes. All family members willing to participate were in- cluded in the interview. The first family interview was formal in that an interview guide was used.

Informal interviews followed the initial family interview. Informal interviews resembled conversations.21,22 Informal follow-up interviews and discussions usually lasted 5–30 minutes and were held with an individual family member, a dyad of family members, or with the entire family.

Interviews were held over a variety of time frames; most family members were interviewed and observed on multi- ple occasions over the days to weeks that they were involved in the withdrawal of LST process. The time frame varied as the withdrawal of LST process differed from family to fam- ily. Interviews were audio taped or field notes were taken.

Family, family/patient, and family/health care provider interactions were observed. Family and health care provider meetings were also observed and audio taped with permis- sion. Observations added another dimension of under- standing to the family experience. Observations also pro- vided data to reinforce interview data or to prompt the researcher to ask further questions for clarification.

Data analysis

Data analysis used an inductive approach and thematic analysis as described by van Manen.19,20 Atlas.ti computer software23 was used to help organize and manage data. The data were managed maintaining a family focus. Within and across case analyses were conducted.24 Within case analyses were conducted with the data from each family.

Across case analyses were conducted as data were obtained from subsequent families. The across family analysis of the data helped to identify aspects of the experience that were shared by all the families. Clusters or themes that emerged for each family were compared with themes that emerged from other families. The clusters were further analyzed and grouped into categories. Similarities that emerged between families provided information that identified what was common to the experi- ence. Data collection and data analysis continued until consis- tent categories emerged from the family level data.

Methodological rigor was established. The researcher had repeated contact with the families and thus had ample op- portunity to confirm interview data and clarify data with families. A sample of family members reviewed the final summary of the phenomenology of the family. A good phe- nomenological description is something that we can nod to, recognizing it as an experience that we have had.19,20

Consistency was determined by the use of multiple meth- ods for data collection. The family interview, multiple in- formal family interviews, observations of family interactions, family/patient interactions, family/health care provider in- teractions, and family meetings provided opportunities to confirm information, clarify confusing/conflicting informa- tion and seek further understanding. An audit trail was es- tablished and evaluated by an expert qualitative researcher.

Results

All physicians gave their consent for the researcher to re- cruit potential families into the study. One physician, when initially contacted, for consent to approach a specific family, thought it was too early. One week later he gave consent and the family agreed to participate in the study. Nineteen of the 21 families asked to participate in the study agreed to do so (response rate of 90%). Two families did not want to partic- ipate in the study. Decisions had already been made re- garding withdrawal of LST and 1 family was waiting for ex- tended family to arrive prior to withdrawal of LST.

Seventeen of the 19 families (90%) agreed with health care provider recommendations to withdraw LST and 16 patients died after LST was withdrawn (one patient died prior to withdrawal). Two families did not agree to recommenda- tions to withdraw LST (one patient died in the ICU and the other patient was still hospitalized when the study ended with plans to transfer to a long-term care facility). The pri- mary LST withdrawn included mechanical ventilation, va- sopressor therapy, or both. Demographic data for the 19 fam- ilies (56 family members) are summarized in Table 1.

The main categories that evolved from the data included: this happens to other families, time to understand the sever- ity of the illness or injury, time to see if health would be re- stored, riding a roller coaster, family readiness: willingness to consider LST as a possible option, one step at a time, fam- ily readiness: time to make a decision, the family will go on, and waiting for a miracle. The categories aided in under- standing that the lived experience for families participating in the process of withdrawal of LST occurred “in their own time.” Pseudonyms are used and identifying information al- tered to assure anonymity.

This happens to other families

Families were shocked that they were involved in the ex- perience. Life was going along and then it was abruptly in- terrupted. As Dot, one patient’s mother, stated, “Life can change so drastically from one day to the next.”

Families could not believe this was happening to them. A common sentiment was, “this happens to other families, not ours.” Families were distressed and distraught as they were faced with making end-of-life decisions for a family member who had become suddenly ill or injured. Jay’s family was in dis- belief of the suddenness, severity, and swiftness of Jay’s illness. How could Jay be so ill? He was so young. It almost didn’t seem real. As Jay’s wife Leslie said, “Who would have ever thought.”

Time to understand the severity of the illness or injury

Family members were told the seriousness of their family members’ illnesses or injuries, yet although family members

WITHDRAWAL OF LST 1117

heard the news they did not necessarily believe it. It took time for family members to understand. It was shocking for a family, for example, to see a family member who had made Thanksgiving dinner less than 1 week before now critically ill, fighting for her life.

TABLE 1. DESCRIPTION OF PATIENT AND FAMILY MEMBER PARTICIPANT DEMOGRAPHICS

Demographic characteristics n (%)

Patients 19 Age (years) 63 mean

68 median 20–82 range

Gender Female 15 (78.9%) Male 4 (21.1%)

Race Black, non-Hispanic origin 3 (15.8%) White, non-Hispanic origin 16 (84.2%)

Religion Protestant 6 (31.6%) Catholic 8 (42.1%) Muslim 1 (5.2%) Unknown 4 (21.1%)

Primary Diagnosis New cancer diagnosis 6 (31.6%)

(i.e., new diagnosis of liver cancer progressing to MODS)

Neurologic events 4 (21.1%) (i.e., cerebral aneurysm rupture leading to subarachnoid hemorrhage)

Trauma 3 (15.8%) (i.e., severe injuries sustained in a motor vehicle accident)

Surgical complication 3 (15.8%) (i.e., development of MODS after gastric bypass surgery)

Pancreatitis 2 (10.5%) (i.e., development of sepsis after acute pancreatis)

Gastrointestinal bleeding 1 (5.2%) (i.e., development of ARDS after acute gastrointestinal bleeding)

Advance Directive No 9 (47.4%) Yes 10 (52.6%)

Family Members 56 Gender

Female 37 (66%) Male 19 (34%)

Race Black, non-Hispanic origin 5 (8.9%) White, non-Hispanic origin 50 (89.3%) Hispanic 1 (1.8%)

Relationship to Patient Adult child 32 (57.1%) Spouse 8 (14.3%) Sibling 5 (9.0%) Parent 4 (7.1%) In-law 4 (7.1%) Other 3 (5.4%)

MODS, multiple-organ dysfunction syndrome; ARDS, acute respi- ratory distress syndrome.

WIEGAND1118

Family members needed time to understand the patient’s prognosis, especially when health care providers determined that the patient would never return to his or her prehospi- talized condition. Families not only needed to know the prognosis, they needed time to understand the prognosis. It took time for family members to understand that their loved one was never going to be the same person again.

Families and individual family members within a family came to this realization at different times. For example Abby’s sister, Claire, realized that her sister was critically ill, however her other sister did not. As Claire stated, “She just doesn’t understand.”

Time to see if health would be restored

All patient situations involved uncertainty. Life-sustain- ing therapies were emergently initiated and then families and health care providers waited to determine how each pa- tient would respond. It was common for patients to have hours or days of stability followed by hours or days of in- stability.

The Johnson family became very upset when a resident was not optimistic the day after Mrs. Johnson’s surgery. Ac- cording to Mr. Johnson, “the resident said, ‘we got her through the operation but you do know the situation?’ Yeah, we know that she only has a little chance and all.” Mr. John- son and his family were upset as they felt the resident was not giving Mrs. Johnson a chance to improve.

Families hoped that ill or injured family members would beat the odds and respond to treatment. They waited and hoped that their family member would open his or her eyes, squeeze a hand, or wiggle a toe.

Riding a roller coaster

Numerous families described their experience as like rid- ing on a roller coaster. Family members went through the ups and downs of the experience together. Their family member might have a day or a period of time where it looked like things were going well, and then the next day things looked less hopeful. As Mr. Ragazo’s daughter described, “It’s just been up and down. He was supposed to get off the vent [ventilator], and then he’d run a fever and he’d get a setback.” Another patient’s son described his mother as hav- ing 4 bad days and then 1 good day: “everything goes up and down, up and down.”

The roller coaster experience had an effect on the family decision-making process. As a patient’s son said:

It’s one thing to make a decision if she was down here [he motioned with his arms down]; not doing well and stay down here, but now she has come up here [he mo- tioned with his arms a step up]; she has improved a lit- tle bit. So, we can’t really make a decision [about LST] when we see improvement.

Family readiness: willingness to consider LST as a possible option

Health care providers commonly had a family meeting during which key members of the health care team sat down with the patient’s family and discussed the possibility of withdrawal of LST. This meeting was very emotional and difficult for family members. The timing of family discus-

sions related to withdrawal of LST was very important. Most families were willing to discuss the possibility of limiting LST only after they understood and accepted their family member’s poor prognosis for recovery. If they were ap- proached too early, families felt that the health care team was prematurely giving up on their family member, questioned the health care provider’s credibility, became angry and lost trust in the health care providers.

During a family meeting Mr. Krieg’s daughter and son- in-law told the health care team that they were not willing to discuss withdrawal of LST as a possible outcome. Mr. Krieg’s son-in-law stated, “We understand that he (Mr. Krieg) is not going to survive, but we need time.”

Individual family member readiness preceded family readiness to discuss the possibility of withdrawal of LST. For example, Nina’s mother, Dot, was willingly to discuss with- drawal of LST as a possible outcome; however Nina’s father was initially not willing to discuss withdrawal of LST as a possible outcome.

One step at a time

Over time families knew the decision that was needed, but didn’t want to make it. Mr. Ragazo’s daughter said, “We didn’t want to make that difficult decision.” Mr. Ragazo’s daughter explained,

At this point he was in pre-organ shut down, and we all decided together, that we weren’t going to do any more dialysis or blood transfusions, but we didn’t want to just completely turn off the vent and give him mor- phine. . . . So we chose to keep him on the ventilator and make sure he’s comfortable. We did stop the medica- tions, like most of them, he was on a Lasix drip, one drip, and they were still sticking his finger, and we said, well you know, let’s let him be and not do that.

Two days later, the Ragazo family asked if the ventilator could be withdrawn, and the ventilator was withdrawn later that day.

Families found that taking one step at a time made the process more manageable. When considering life and death decisions, the majority of families made decisions to with- hold LST and decisions to withdraw LST followed at a later point in time. Most families were able to reach a decision to withhold LST, whereas decisions to withdraw LST required more time and contemplation. Several families said that they hoped that their family member would die on his or her own, thus they would not need to make a withdrawal of LST de- cision.

At a family meeting the Lyle family decided that car- diopulmonary resuscitation (CPR) and aggressive resuscita- tive measures would not be initiated if Mrs. Lyle experienced a cardiac arrest. The Lyle family decided to withhold LST, but needed more time to talk as a family prior to making a decision related to withdrawal of LST. Two days after the family meeting, the Lyle family came to the hospital having decided that LST would be withdrawn that day.

Family readiness: Time to make a decision

The decision to withdraw LST was a tremendous decision. Family members described the decision to withdraw LST as

“the hardest decision,” “a horrific decision,” and a “cosmic decision.” Families needed to decide in their own time. Even- tually, all families were able to achieve consensus. Soon af- ter a discussion with the health care team some family mem- bers were able to decide quickly, whereas other family members needed more time. If families were pressured to make a decision the family became more protective, defen- sive, and insistent that all aggressive treatments continue.

For families it was very important that all of the family members were ready. Mr. Braitt wanted to wait a few more days before making a decision related to withdrawal of LST for his wife. As he described, we waited “just to satisfy the youngest daughter . . . I think the rest of us (he and his fam- ily) see it in a more realistic way, but she has more hope than we do that something good is going to happen . . . Techni- cally, I think it is my decision, but I sort of let everybody get in. . . . I want to keep everybody happy, because I know, on something like this, it’s a lot of stress on everybody.”

Individual family member readiness preceded family readiness. Family consensus was important. Mr. Johnson stated, “I know that I have really the say for it, but I want consensus.” Mr. Johnson talked with Mrs. Johnson’s sister, Mrs. Johnson’s mother, and all of Mr. and Mrs. Johnson’s adult children. All of the family agreed with the health care team’s recommendation to withdraw LST. Laura, Mrs. John- son’s oldest daughter said, “it’s been really hard. I had a sense last week what we needed to do, but we needed to wait for everybody to come along.” The decision to with- draw LST was a family decision and families needed time to come to consensus as a family.

The family will go on

The entire family was affected by the experience. Family members began to anticipate what the decision meant to the family and most family members began anticipatory griev- ing. Depending on the relationship, family members lost a spouse, mother, father, brother, sister, or child. Even while the family member was critically ill, the remaining family members began to adjust to changing roles, responsibilities, and relationships with each other.

Each family was faced with a changing future. Family members anticipated the loss of a future for and with their ill or injured family members. Life was suddenly changed and future possibilities were altered. Despite the loss of the ill or injured family member the family needed to go on.

Waiting for a miracle

Immediately after each patient’s illness or injury, family members were very hopeful for healing and recovery. All of the families were very hopeful that the outcome would be good. When the condition of each patient failed to improve or in some cases deteriorated, families often hoped for a mir- acle. Families hoped and many prayed that their family member would prove the health care team wrong and im- prove. Jason knew that his mother had three organs that had failed (her heart, lungs, and kidneys), yet despite this, he continued to hope for a miracle. He knew it might not hap- pen, but he was going to continue hoping for a miracle any- way.

Hope for a miracle continued for some families up until the very end. On the day that the Johnson family came in

expecting that LST would be withdrawn, Mr. Johnson ap- proached his wife’s nurse in the ICU hallway and told him, “We are here today to withdraw, unless a miracle hap- pened.” Even after LST was withdrawn, Mr. Johnson said, “I’m waiting for her to open her eyes and start talking.”

Discussion

The results of this study offer a unique understanding of what families experienced as they participated in the pro- cess of withdrawal of LST from a family member with an unexpected, life-threatening illness or injury. This study sup- ports findings of other researchers who have studied expe- riences of family members involved with the process of with- holding and withdrawing LST. The investigation confirmed the finding that decisions to withdraw LST commonly in- clude multiple family members.1,5,10,11 Families in this study tended to make the withdrawal of LST decision as a family through a consensus process. Tilden and colleagues5 also found that most families pulled together and made decisions related to withdrawal of LST as a group.

Families have described the decision to withdraw LST as the hardest thing they ever had to do.1,10,11 Families in this study echoed this sentiment as words such as “horrific” and “cosmic” were used to describe the decision. All families re- alized the intensity and the enormity of the decision.

Tilden and colleagues1(p436) noted that “eventually, a turn- ing point either in the patient’s condition or the family’s readiness arrived and was followed shortly thereafter by ei- ther the family or clinicians pressing toward a decision” (to withdraw LST). This study expands on the concept of fam- ily readiness and defines family readiness from two per- spectives, family readiness to have the discussion regarding withdrawal of LST as a possible option and family readiness to make a decision regarding withdrawal of LST. Families were willing to have a discussion regarding withdrawal of LST as a possible option when the patients’ family members understood the seriousness of the patients’ illnesses or in- juries and that the patients’ prognoses, although tenuous, were poor. It took time for all family members within a fam- ily to understand the patient’s condition and be willing to discuss withdrawal of LST as a possible option.

Decisions related to withdrawal of LST needed to be made by families in their own time and the timing varied for each family. Families were able to make decisions regarding with- drawal of LST when family members understood that pa- tients’ prognoses were poor and when all family members were ready. It took time for all family members within a fam- ily to understand the patient’s condition, be willing to dis- cuss withdrawal of LST as an option, and most importantly to come together as a family and agree to health care provider recommendations to withdraw LST.

Mayer and Kossoff13 found that although the majority of family members (79%) stated that the timing of the first dis- cussion to withdraw LST was just right, 17% thought it was premature. This study found that families, who were ap- proached too early, before they were ready, became more re- sistant to having discussions related to the possibility of withdrawal of LST and more insistent that aggressive treat- ments continue.

The current study offers new understanding of the family experience related to the process of withdrawal of LST. Fam-

WITHDRAWAL OF LST 1119

WIEGAND1120

ilies needed time to understand their family member’s con- dition. This was especially important as family members’ ill- nesses or injuries were sudden, unexpected and involved un- certainty. Families facing the sudden, unexpected illness or injury of a family member needed time to realize that life- sustaining interventions were not effective in restoring health and although their family member was alive, his or her life was drastically altered.

Families in this study described feeling like they were on a roller coaster. This was especially true as the condition of the patient often vacillated from stable at one point in time to unstable the next. This roller coaster effect was created by the patient and experienced by the family with families mov- ing up and down and reacting variably to the roller coaster. Being on a roller coaster affected the ability of families to make decisions about withdrawal of LST.

Decisions to withdraw LST often involved a two-step pro- cess with many families in this study making decisions to withhold LST prior to making decisions to withdraw LST. Thus, a decision was made to withhold LST such as aggres- sive resuscitation if it was needed and at a later date, a de- cision was made to withdraw LST. For example, a decision was made to withhold aggressive resuscitation and any new treatments (e.g., renal dialysis) should they be needed before decisions to withdraw LST. A stepwise decision making pro- cess for families in this study was helpful. Many families hoped that their family member would die naturally with- out them having to make an active decision to withdraw treatment.

The results of this study have important implications for clinical practice (Table 2). The results of this study also have important research implications. The concepts of individual and family readiness in relation to end-of-life decisions need further exploration. Assessment of family readiness may prove invaluable to facilitating the family decision-making process. Future research should continue to help health care providers to better understand what families experience as they participate in the process of withdrawal of LST.

Limitations

Since one researcher collected all data for the study re- searcher bias is a potential limitation. Safeguards were put in place in an attempt to prevent this, such as the use of mem- ber checks for families to give feedback about the data and the use of an audit trail so that an expert qualitative re- searcher could review all data. Also since one person ob- tained data, that one person could not be at the hospital 24 hours per day, 7 days per week. Thus, the researcher did not directly observe all experiences that families told her about. Another limitation was that all family members participat- ing in the withdrawal of LST process were not able to par- ticipate in the study. Distance or ill health prohibited some members of a family from being physically present at the hospital; however they were involved in the process via tele- phone or daily updates. Since they were not present in the hospital they were not included in the interviews and ob- servations.

TABLE 2. POSSIBLE INTERVENTIONS TO USE WITH FAMILIES PARTICIPATING IN THE PROCESS OF WITHDRAWAL OF LST FROM A FAMILY MEMBER WHO EXPERIENCED AN UNEXPECTED, LIFE-THREATENING ILLNESS OR INJURY

Family experience Possible interventions

This happens to other families (shock and disbelief) Acknowledge family feelings Offer family support

Time to understand the severity of the illness or injury Keep family informed Give family time to understand the serious nature of the

illness or injury Time to see if health would be restored Keep family informed

Acknowledge the uncertainty of the illness or injury Riding a roller coaster Acknowledge the up and down (roller coaster) course

Offer family support Family readiness: willingness to consider LST as a Assess if families are ready to consider withdrawal of LST

possible option as an option Does the family understand and accept that the patient has

a poor prognosis? One step at a time Assist families with decisions to withhold LSTs prior to

decisions to withdraw LSTs Assist families with shared decision-making

Family readiness: time to make a decision Assess if families are ready to make a decision related to withdrawal of LST

Assist families as needed to achieve family consensus Assist families with shared decision-making

The family will go on Support the family throughout the process Incorporate additional services for families (palliative care

team, clergy, bereavement support, etc.) Waiting for a miracle Support families desire for hope and help the family by

balancing this with inevitable outcome Offer family support

LST, life-sustaining therapy.

WITHDRAWAL OF LST 1121

Conclusions

An acute, unexpected life-threatening illness or injury of a family member leaves a family vulnerable. Each family has a unique experience based on the context of the illness or in- jury, the family, and the experience. The family experience participating in the process of withdrawal of LST happened for families “in their own time.”

For families in this study their family members’ illnesses or injuries happened suddenly and unexpectedly. Families needed time to overcome the initial shock, comprehend the severity of their family member’s illness or injury, resolve the period of uncertainty, come together as a family to con- sider the possibility of withdrawal of LST, to eventually de- cide as a family to withdraw LST and to go on as a family. As one patient’s daughter described, “It was a terrible ex- perience but it was a good experience.” It is our responsi- bility as health care providers to support and help families through this process.

Acknowledgement

The author would like to thank Janet Deatrick, R.N., Ph.D., F.A.A.N., associate professor at the University of Pennsyl- vania, for her support, guidance, and critique throughout the investigation. This work is dedicated to the families who shared their experiences.

Author Disclosure Statement

The author acknowledges funding support provided by pre- doctoral fellowship support from NIH/NINR (F31-NR07558), a Mentorship Research Grant from the American Association of Critical-Care Nurses (AACN), and a Research Grant from the Southeastern Pennsylvania Chapter of the AACN.

References

1. Tilden VP, Tolle SW, Nelson CA, Thompson M, Eggman SC: Family decision-making in foregoing life-extending treat- ments. J Family Nurs 1999;5:426–442.

2. Danis M: Improving end-of-life care in the intensive care unit: What’s to be learned from outcomes research? New Horizons 1998;6:110–118.

3. Faber-Langendoen K: Process of forgoing life-sustaining treatment in a university hospital: An empirical study. Crit Care Med 1992;20:570–577.

4. Shannon S: Helping families prepare for and cope with death in the ICU. In: Curtis JR, Rubenfeld GD (eds): Man- aging Death in the Intensive Care Unit. New York: Oxford Uni- versity Press, 2001, pp. 165–182.

5. Tilden VP, Tolle SW, Garland, MJ, Nelson, CA: Decisions about life-sustaining treatment: Impact of physicians’ be- havior on the family. Arch Intern Med 1995;155:633–638.

6. Angus DC, Barnato AE, Linde-Zwirble WT, Weissfeld LA, Watson RS, Rickert T, Rubenfeld GD: Use of intensive care at the end of life in the United States: An epidemiologic study. Crit Care Med 2004;32:638–643.

7. Prendergast TJ, Luce JM: Increasing incidence of withhold- ing and withdrawal of life support from the critically ill. Am J Respir Crit Care Med 1998;155:15–20.

8. Heyland DK, Rocker GM, O’Callaghan CJ, Dodek PM, Cook DJ: Dying in the ICU: Perspective of family members. Chest 2003;124:392-397.

9. Swigart V, Lidz C, Butterworth V, Arnold R: Letting go: Family willingness to forgo life support. Heart Lung 1996;25: 483–494.

10. Jacob DA: Family members’ experiences with decision-mak- ing for incompetent patients in the ICU: A qualitative study. Am J Crit Care 1998;7:30–36.

11. Tilden VP, Tolle SW, Nelson CA, Fields J: Family decision- making to withdraw life-sustaining treatments from hospi- talized patients. Nurs Res 2001;50:105–115.

12. O’Callahan JG, Fink C, Pitts LH, Luce JM: Withholding and withdrawing of life support from patients with severe head injury. Crit Care Med 1995;23:1567–1575.

13. Mayer SA, Kossoff SB:Withdrawal of life support in the neu- rological intensive care unit. Neurology 1999;52:1602–609.

14. Roberts JC, Snyder R, Kjellstrand CM:Withdrawing life sup- port—The survivors. Acta Med Scand 1988;224:141–148.

15. Oliverio R, Fraulo B: SUPPORT revisited: The nurse clini- cian’s perspective. Holist Nurse Pract 1998;13:1–7.

16. Wiegand DL: Families and withdrawal of life-sustaining therapy. J Fam Nurs 2006;12:165–184.

17. Norton SA, Tilden VP, Tolle SW, Nelson CA, Eggmn ST: Life support withdrawal: Communication and conflict. Am J Crit Care 2003;12:548–555.

18. Wiegand DL: Withdrawal of life-sustaining therapy after sudden, unexpected life-threatening illness or injury: Inter- actions between patients’ families, healthcare providers, and the healthcare system. Am J Crit Care 2006;15:178–187.

19. van Manen M: Practicing in phenomenological writing. Phe- nomenol Pedagogy 1984;2:36–69.

20. van Manen M: Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. London, Ontario: The State University of New York; 1990.

21. Kahn DL: How to conduct research. In: Cohen MZ, Kahn DL, Steeves RH (eds): Hermeneutic Phenomenological Research: A Practical Guide for Nurse Researchers. Thousand Oaks, CA: Sage Publications, Inc., 2000.

22. Munhall PL: Phenomenology: A Method. In: Munhall PL (ed): Nursing Research: A Qualitative Perspective. Sudbury, MA: Jones and Bartlett Publishers, 2001.

23. Scolari Atlas.ti 4.1. Thousand Oakes, CAL: Sage Publications Software; 1997.

24. Ayres L, Kavanaugh K, Knafl KA: Within-case and across- case approaches to qualitative data analysis. Qual Health Res 2003;13:871–883.

Address reprint requests to: Debra Wiegand, R.N., Ph.D.

University of Maryland School of Nursing 656 West Lombard Street

Baltimore, MD 21201

E-mail: [email protected]